Rarity Life Issue 8 by Rarity Life

Living your best

LIFE

A TRULY INCLUSIVE M AGA ZINE FOR THOSE AFFEC TED BY R ARE DISE ASE , DISABILIT Y OR C ANCER

A Same but Different Publication

arity

ISSUE

R EDITOR’S LETTER

arity

Living your best

LIFE

Hello,

Welcome to our latest issue of Rarity Life. It feels like a very personal edition because in it we highlight some of my personal journey, highlighting the reasons behind why Same but Different initially came into being, through to the lived experience of me and some of the team. Usually, we focus so much on other people we forget that our story is often weaved into the thread of the narratives we create. As ever we are incredibly grateful to our contributors. This edition is packed with experiences and visuals that makes it our largest edition yet. We just could not leave anyone out. Please take the time to read about our latest initiative – ‘What matters most?’ and the incredible reflections of those facing end of life, their carers and healthcare professionals. You can meet a whole host of people including our front cover inspiration Kiera. At such a young age her achievements are awe inspiring. There are too many people to list here but we are incredibly grateful to everyone who has worked with us throughout 2023 and we look forward to sharing more with you in the coming months.

Ceridwen Hughes Same but Different

MEET THE TEAM

Ceridwen Hughes

Ilmarie Braun

Katy Parry

Anne Dewhurst

Claire Li

George Irwin

Sally Stringer

Gareth Jones

CONTENTS

SbD focus

40 64

Style

Reaching for the stars with Kiera Byland

Young voice

22 34 58

The Lingen Davies Cancer Fund

Copenhagen capers

Love is not rare - finding extra hours to care in Singapore

My life

SHINE a Special Olympian’s journey

an accessible break in the happiest city in the world

in conversation with Daniel DeFabio, Co-Founder of The DISORDER Channel and DISORDER: The Rare Disease Film Festival.

Hasselblad Heroines

in conversation with Ceridwen Hughes

Nothing can prepare you for a real incurable illness quite like an imaginary one

Art & culture What we’re into

From colour runs to bonfire balls, supporting those affected by cancer

with Francesca Khor

I am unique SMA Europe, creating a better world for people living with SMA

ISSUE

WINTER 2023

The sixth stage of grief

Health & wellbeing

48 82

contributed by Ian Marchant

What matters most?

Living with

Accessible travel

Cost of living

Mindfulness a reset for you!

Making Christmas easier with essential aids & exciting gifts

5 questions with

5 questions with Jenny Rawling, co-founder of The UK Infantile Spasms Trust (UKIST)

reviews

Directory

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REACHING FOR THE

STARS

Kiera Byland BEM (British Empire Medal) has always reached for the stars! Her determination and hard work has seen her achieve so much including six gold medals for cycling to date in the Special Olympics World Games and five INAS World Cycling Championships gold medals.

Dress: Green Velvet Kimono Midi Dress £55.00 Sizes 8 to 26

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All photographs by Ceridwen Hughes Make up by Cathryn Rawlinson Bridal Makeup 4

STYLE

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Dress: V Neck Ruffle Jacquard Midi Dress £159.00 Sizes 8 to 18

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STYLE

Hat from Amazon

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STYLE

“Who would have thought all the things that I’ve done through my life - starting off in quite a horrible time at the start - but look where I’ve got to...”

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Dress: V Neck Ruffle Jacquard Midi Dress £159.00 Sizes 8 to 18

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STYLE

SHINE A Special Olympian’s Journey

“The beginning of love is to let those we love be perfectly themselves, and not twist them to fit our own image, lest we love only the reflection of ourselves we find in them” Thomas Merton, Trappist Monk and Social Activist.

Images courtesy of Kiera Byland 12

Timothy P Shriver shared this quote within a message to the Special Olympics movement on the passing of his mother, Eunice Kennedy Shriver. Eunice, the sibling of US President Kennedy, was the founder of the Special Olympics movement, the largest organisation dedicated to promoting respect, inclusion and acceptance of people with disabilities. Having recognised that people with intellectual disabilities were often stigmatised and unjustly treated, and typically had no place to play, she shared in 1962 via the media, that her sister, Rosemary, had an intellectual disability. This public declaration from Eunice signalled her commitment to create change, and through founding Camp Shriver in 1962 - a back yard summer camp at her Maryland

YOUNG VOICE farm which provided people with disabilities the opportunity to participate in sports and other activities - she inspired others to join her. Six years later the first International Summer Games were held in Chicago. The goal was “to put a bright, and very public spotlight on ability, not disability”.

“If you have a lot of medical needs as well as going to hospital all the time, surgery or going to meetings or having to see dentists or talking to doctors and things like that it can be really hard to stay focussed. I was saying to them that if I have to do that as well as go to school, it’s hard. So, no wonder I look like I’m falling asleep in lessons or not looking like I want to be there”. Kiera’s mum, Jacqui, added “It wasn’t necessarily that she couldn’t get friendships. She just could never keep them because she never understood the etiquette needed for socialisation.”

Since then 5.5 million athletes, from over 193 countries, have participated in the opportunities the Special Olympics have provided – through yearround sports, health, education and community building - with the support of 1.1 million coaches and volunteers. One of those athletes is twenty-five year old Kiera Byland, whose story is one of self-discovery, personal growth, teamwork, diagnosis, triumphs, life changing experiences and encouraging others to be the very best version of themselves.

Formal diagnoses of a rare genetic condition, learning disability, dyscalculia, and dyspraxia came in stages for Kiera. At age fifteen, Kiera wanted to know why she didn’t “learn like everybody else”, and so she was referred for genetic testing.

In Kiera’s formative years, and indeed into her early teens, life was especially challenging for her and a world away from what it is today. Kiera attended mainstream school and explains that “I didn’t like school. I’m not very academic. I tried hard but also it was the friendships, the bullying just, I guess, kind of got too much. I didn’t really feel supported by the school....” In addition, having to attend a plethora of medical appointments further affected her learning and motivation. 13

As no definitive diagnosis could be provided at that time, her DNA was kept on file. Jacqui then explains “…because technology is improving all the time… they came back and said, ‘Kiera, we’ve found that you’ve got Rubinsteins-Taybi Syndrome, but yours is mosaic because you don’t have any of the physical features’”.

Then, in the last couple of years, and with support from her mum, Kiera approached her GP, explaining “I want to know me and I want to understand me.” Kiera had been considered as having “traits” of autism throughout her childhood, however, she then received a formal diagnosis. For her this diagnosis has meant “…its self-growth, understanding. Why I feel what I feel, why I do what I do, why I say how I say it, not necessarily what I mean to say. It kind of comes out. It explains why. When people question why I needed a diagnosis I tell them it is because it means I can get the support that I needed”. Jacqui added “it was almost like somebody had given her the key to a door, which she then opened so she could be herself.” From the age of twelve other, very special, doors were also beginning to open for Kiera. Accompanying her dad, Brian, to Manchester velodrome, and despite experiencing significant challenges with dyspraxia, Kiera mastered riding a bike. But this was not just any bike it was one without brakes, so “you learn very quickly” explains Kiera. 14

At fourteen, whilst involved in a MENCAP swimming event (swimming alongside horse-riding are other sports she loves and competes in), she was approached by a member of the Special Olympics Team, who learned of her interest in cycling. By 2015, whilst still persisting with her academic studies, Kiera had, with the support of family and friends, trained hard, sought the right support, and fundraised tirelessly to buy herself a bike and compete in the 2015 Los Angeles Special Olympics World Games. Kiera returned with three gold medals and new friendships established. Since then, Kiera has acquired a plethora of medals and awards, but it doesn’t end there. In 2021, she received the British Empire Medal for services to sport. She said “it was nice…because I got to hear the other stories of why other people got their medals as well. I wore my granny’s wedding suit that she made for herself. She got married in 1955 and I said I want to wear it. I worked very hard to make sure I was eating the right food and trained hard.” Kiera was awarded her medal by the Lord Lieutenant and heeded his words on the day: “he said, you’ve got to work hard, even though you’ve been given this honour. So, I have”

YOUNG VOICE

“I just felt happy, honoured, and lucky. Wow, a lifetime opportunity. Who would have thought all the things that I’ve done through my life - starting off in quite a horrible time at the start - but look where I’ve got to and I’m still continuing to do” While all of this – plus the hours and hours of training and dedication alongside coaches and mentors - is remarkably impressive, memorable and truly well deserved, what is beyond incredible is her passion for inclusion, giving back and championing others to achieve. Kiera is qualified to teach both swimming and cycling. She explains “I’ve always said that, as a coach, I always want to give opportunities to children, no matter what (disability) they have. It doesn’t matter if it is big or small, it is progression, it is celebrated. If you can feel happy and passionate about it, they will feel happy and passionate about it, that learning space then becomes a positive environment. Children will feed off that…but it’s trying to be calm as well when things happen that you

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don’t necessarily expect to happen either”. She adds “when they get the correct support… give them the space to let them do their thing, let them thrive and show everybody what superstars they are”. Recognising others’ strengths and needs, the importance of acceptance, accessibility, person centred approaches not just within sports, but in society too – is of paramount importance to Kiera. So too is encouragement; when asked what advice she’d give to others interested in sport, she said “give it a try…you never know what you’re going to enjoy” even if “you might do things a little bit differently than other people”. In 2024 Kiera will commence a new four-year role in the Special Olympics as the chairperson of the Global Athlete Leadership Council “even though you have an intellectual disability, there’s so many different ways that you can become a leader” she adds. This important position may involve more globetrotting, attending meetings, giving speeches in front of many people etc. Support from a team of individuals is needed to enable Kiera to undertake this role – including her parents, mentors, PA’s and coaches. 16

Jacqui adds “…if you took away all that foundation of support, it would come tumbling down, and that’s what people forget” When asked what this new role meant for her, Kiera said “It makes me feel really proud that my own peers, the athletes, chose me. It’s a big responsibility, but I’ll enjoy it because it means I get to interact with so many different people, hear their journeys, hear their paths. If they’ve got opinions or thoughts that they want to put forward on different projects, about things that the Special Olympics do, then I can be that person to put it forward”. In her 1987 World Summer Games Message of Hope, Eunice Kennedy Shriver addressed the Olympic Athletes stating

“You have taught us that what matters is not power or politics, weapons or wealth. What truly counts is the courageous spirit and the generous heart.” Kiera effortlessly radiates that message; possessing courage, empathy and generosity in abundance. Sport has provided her with so much, including purpose, confidence, friendship and motivation. Her commitment, not only to her own sports, but to inclusion and supporting others to realise their own dreams, being their voice, celebrating achievements and helping to keep that spotlight on ability, is apparent. She is clearly loved and admired by many, and she is, above all, indisputably, perfectly herself.

YOUNG VOICE

About Rubinstein-Taybi Syndrome Rubinstein-Taybi Syndrome, also known as RTS, is a rare, lifelong genetic condition which affects each individual differently, and to a varying degree. It is caused by a mutation in the CREBBP or EP300 gene, or also as the result microdeletion of genetic material from chromosome 16. The condition can be, but is not always, characterised by distinctive facial features, microcephaly, broad thumbs and first toes, growth delay in the early months and years and learning disabilities. Additional features might also include heart and kidney defects, eye abnormalities, dental problems and obesity.

Contact information

Visit website

Copenhagen capers An accessible break in the happiest city in the world

Photograph by Ava Coploff, Unsplash 18

ACCESSIBLE TRAVEL

COPENHAGEN

THINGS TO DO

Copenhagen (København) is the beautiful capital city of Denmark, and home to the Danish royal family. Despite being a city Copenhagen isn’t as busy and chaotic as many other European capital cities, instead, it has the feel of a large town, with its friendly inhabitants and the ‘hygge’ way of life. Today it is known as the happiest city in the world, and has been declared the 2023 Capital of Architecture - which is not surprising as beautiful historic buildings sit right alongside sleek, innovative and modern designs. It was also named by Lonely Planet as one of the top 10 cities to visit worldwide! It is important to note that there are a few cobblestone areas, some are smoother than others, so if you are in a wheelchair we recommend researching your visit prior to going.

There is plenty to do and see; you could start with a visit to the Royal Palace to watch the changing of the guards which occurs daily, see one of the many fairytale castles or perhaps visit the ‘Little Mermaid’ sculpture that sits in the harbour looking longingly at the shore, mesmerising visitors for over 100 years. There really is something for everyone here in Copenhagen.

There is an abundance of information available online to help you plan, including this Visit Copenhagen website:

The Blue Planet, the national aquarium of Denmark

Visit here

Nyhavn Nyhavn translates to New Harbour and once served as the main docks for Copenhagen. It was the home city for 18 years of author Hans Christen Andersen, famous worldwide for his Christian fairytales such as The Little Mermaid and the Ugly Duckling. Today it is known for its beauty and the traditional, colourful Scandi homes that line the waterfront. It is a great place to visit for a cold beer, and tasty food with a wide array of bars and restaurants, a vibrant and hip area that is popular with locals and tourists alike.

Den Blå Planet –

This is Northern Europe’s largest aquarium, and a trip here will not leave you disappointed. Opened in 2013 it has 53 different tanks and is home to a variety of animals including Hammerhead Sharks, sea otters and a giant pacific octopus. It is a short walk from the Kastrup metro station, close to the airport. The aquarium is fully accessible to wheelchair users, visually impaired and hearing impaired visitors. It’s a great day out for adults and children alike. Visit website

Frederiksborg Castle This Renaissance castle is direct from fairytales, built on three small islands and surrounded by water that perfectly reflects the stunning building and romantic turrets. It is an enchanting sight for adults and children alike. A royal residence until the mid-1800s, today it houses the Museum of National History for Denmark. Visit website

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MUST SEE Tivoli Gardens

Photograph by Rachel C, Unsplash

No visit to Copenhagen is complete without a day at Tivoli Gardens. Built in 1843, the gardens are also the home of one of the oldest amusement parks in the world, which was visited by none other than Walt Disney, who drew a lot of inspiration for his own park. The gardens are fully accessible and open all year round. Within Tivoli, there are 60 places to eat, from restaurants to the food hall. Throughout the year it holds different festivals and events, including Christmas when the gardens are magical, with hundreds of lightfestooned Christmas trees holding thousands of baubles. The Christmas market there is one of the best in Europe and makes for a wonderfully festive day. You can enjoy a choice of Danish festive foods, from gingerbread to Æbleskiver (A traditional Danish-style pancake ball snack) – all best washed down of course with a traditional warm Danish Gløgg (mulled wine) Visit website

WHERE TO STAY There is a huge choice of hotels to choose from in Copenhagen, from traditional to modern and a good selection to suit your budget. Always check directly with the hotels if you need to book accessible rooms, as not every hotel has this option.

AC Hotel Bella Sky

Charlottehaven Hotel

The Tivoli Hotel

This hotel is based outside the city centre close to the airport, but there is a metro station close by so it’s just a short 10 minute trip into the city centre. The hotel is modern and contemporary with excellent views over the city. The rooms are bright with floor-to-ceiling windows and showcase a modern monochromatic design. On site are 4 restaurants, including the rooftop bar and restaurant which affords excellent views.

Charlottehaven Hotel is not your typical hotel, it is a welldesigned, sustainable and green hotel. All the rooms are serviced self-catering apartments offering space, comfort and style. A home from home, furnished with classic Danish designs but with all the amenities of a hotel. The area has plenty of shops and restaurants close by, and the nearest metro station is two minutes from the hotel. The staff are helpful and friendly and will ensure your stay is enjoyable.

The Tivoli Hotel has over 600 rooms and caters for everyone from business travellers to families. It is conveniently located in the trendy Vesterbro district and is within walking distance of galleries, restaurants and shops. It is also a short walk to the famous Tivoli Gardens. The hotel offers packages that include entry to Tivoli. On site, the hotel has 3 restaurants, including the MASH penthouse affording you enviable views across the city. The rooms are clean and well-furnished, offering a comfortable stay.

Visit website

ACCESSIBLE TRAVEL

Photograph by Arek Adeoye, Unsplash

WHERE TO EAT There is no shortage of places to eat and drink in Copenhagen. From the food hall stalls in Tivoli to one of the 15 Michelin-starred restaurants, you will find something to suit your budget and your palette.

Ravelinen

Sidecar

Vækst

You would be forgiven for believing Ravelinen Restaurant is in a rural location, situated in nature and overlooking a lake, but in reality you are in the heart of Copenhagen. Serving up tasty traditional Danish meals this place needs to be on your to visit list. The menus change with the seasons and only the best local produce is used. Opened in 1994 it’s been delighting customers for almost 30 years.

Sidecar is famous for its highly rated brunches and is a popular spot to eat. Open from 8am until 10.30pm and based in the heart of Norrebro, this should make it on your list of stops. Besides the brunches they have taster menus for the evening and cocktails that are amazing. The menu is seasonal and tasty, and the attentive staff will welcome you and make you feel right at home.

Situated in Copenhagen’s Latin quarter, Vækst is a restaurant that has great food and nature at its heart. It is fine dining in a relaxing atmosphere, and the food is fresh, seasonable and contemporary, with excellent wine pairings. Set menus are offered alongside an A la Carte menu giving you plenty of choice.

Visit website

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Images courtesy of Daniel DeFabio

Filmmaker Daniel DeFabio and his son Lucas in a scene from the documentary “Menkes Disease: Finding Help & Hope” www.defabiodesign.com

MY LIFE

The

SIXTH STAGE OF GRIEF

In conversation with Daniel DeFabio, Co-Founder of The DISORDER Channel and DISORDER: The Rare Disease Film Festival. “Eventually we got through the worst of the shock and moved on with building the best life for him. He was a very happy smiley guy, and he showed us a different way.” When you become parents to a child with a rare disease or condition, especially if there are related complex medical needs, life is forever changed. As part of coming to terms with their new family life parents often go through a period of grief and mourning for how they had imagined their life would be, until they find some kind of weary peace with the rhythm and routines of their new normal. When Daniel and Tina’s first child, a son they named Lucas, was born two weeks early he had a fractured skull and was also jaundiced, so he spent the first ten days of his life in the NICU (neonatal intensive care unit) before he was able to come home. In the first few months of his life his parents could see that he was perhaps a little behind on some developmental milestones, but the doctors reassured them that he may well still be catching up, and healing from his skull fracture. Daniel recalls that “for a while there was

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a way to dismiss the warning signs, but at nine months not only was he behind on milestones, he actually regressed, and lost the ability to flip from his stomach to his back, and that was the most clear sign that we had.” The geneticist they visited had seen two other children with Menkes disease in his time, and so it only took a few months for Lucas to receive his diagnosis, which was, he explained, unusually quick. “And yet, as good as it is to get a quick diagnosis, it was a bit cruel in this case, because my son Lucas had spent the first 10 days of his life in a NICU, and Menkes disease is one of the few rare diseases that has a treatment, but only if it is given in the first 10 days of life. So, for him to be diagnosed at age one was not as helpful as it could have been.” Over the following months, and indeed years, Daniel and Tina began to adjust, though “there was a very clear recalibration that my wife and I had to go through, to accept that this changes everything. What you tend to grieve is what you expected to happen, and those expectations are out the window [because] maybe none of those things are going to happen. And you can grieve for every one of them… it probably took two years to really adjust, but that is probably the biggest shift and change that allows you to manage this at all. Otherwise, I think you’re just in constant despair and sadness, and probably a dark spiral.” As is often the case in families, they both moved forward in the way which they needed to, finding their focus and strength in different ways. Tina was, he explains, much more inward facing, and focused on what would benefit Lucas and what he needed to thrive. Whilst Daniel shared

Lucas DeFabio as seen in the short film “Menkes Disease: Finding Help & Hope” directed by Daniel DeFabio, co-founder of D:RDFF 24

this focus, he also felt a strong need to reach out, and to connect with others who were going through something similar. “I had a background in film, and so I began to tell his story as a blog post. As that seemed to resonate with people, I thought that maybe the story should be a film too, and that sort of put a whole bunch of things into motion.” In trying to find suitable places to screen his film, ‘Menkes Disease: Finding Help and Hope’ Daniel realised that there were no festivals that he could easily access, as typically independently produced short films are screened at local, national, or international film festivals which have specific eligibility genres or categories for submission. Whilst attending a conference hosted by the organisation Global Genes, he met a man called Bo Bigelow whose daughter also had a rare condition, and who shared Daniel’s determination and drive to shine a light on rare diseases. “We realised maybe if the perfect place to show rare disease films didn’t exist, that we should create that place. So, we did, we created ‘DISORDER: The Rare Disease Film Festival.’” DISORDER: The Rare Disease Film Festival was an innovative new event, with the specific aim of showcasing short films submitted from across the world, centred on aspects of life with a rare disease. The inaugural festival was held in October 2017 in

MY LIFE Lucas and Daniel DeFabio as seen in the program “Pain Points” on The DISORDER Channel

Tina and Lucas’s younger brother the timing of his death was particularly hard. “It was the worst. We live a little bit north of New York city, and in May 2020 it was at the epicentre of the pandemic for America. So, it had a huge impact in that they were only letting one guardian into the hospital at the time. I was in hospital with Lucas, as we chose that it would be me and not my wife, but that of course had its own challenges.”

Boston, with the second festival taking place in San Francisco in 2019. However, the onset of the COVID-19 pandemic meant that plans for the third festival needed to be reconsidered, and with successive lockdowns becoming a reality in many countries, it began to look as though in person events might not be an option for an unknown period. It was then, Daniel explains, that “we realised we could launch a streaming channel, which became The DISORDER Channel, which you can get on Roku or Amazon Fire TV devices for free. Although we certainly missed aspects of the in-person screenings that were so important to get people together, and to make those connections, the channel offered different opportunities. For example, at a film festival we might need to limit how many films we could show. Certainly, if we already had one film about mitochondrial disease, we might not want two or three more, but with a channel the inventory can be almost infinite.”

Today there are almost 250 films and videos available to watch. In addition, the channel features several series, where there are a number of films about an individual rare disease, giving a real breadth of insight, experience and knowledge about that disease. The team also select some of the films to be featured on their YouTube channel (linked here), meaning these are available to watch for anyone with access to the internet. The DISORDER Channel was due to launch in a week that became the most difficult week for the DeFabio family, as their beautiful Lucas deteriorated after undergoing four vital surgeries over six days. For families whose child or children live with a complex, degenerative, life-limiting condition, losing their child is made no easier by knowing it will happen. The circumstances in which a child passes away matter so much, and for Daniel, www.samebutdifferentcic.org.uk

After Lucas had died the family didn’t feel able to have a funeral for him, or to ask people to gather to remember him. However, they still found a way to remember and honour Lucas. “It was actually my younger son, who at the age of nine is wise beyond his years; he decided what our memorial for Lucas should be. It was to plant trees in our backyard…. [it] was going to be a little ceremony, and I asked him if we were just gathering, or if we were speaking and everybody said ‘no, let’s just be silently here.’ And then, after a little while, he looked at my wife and I, and said ‘can you guys go away? I want to sing him a song.’ I’ll never know what the song is.”

“I called my first film on Menkes disease ‘Menkes Disease: finding Help and Hope’ because at the time and this is still true for so many rare diseases, if you go on WebMD or Google you only read really bad news… and yet, some good things will still happen.” 25

Although grief is universal and will almost certainly impact most of us in our lifetimes, the death of our children is a grief that most of us simply cannot, and do not want to have to imagine. Despite the grief many parents go through when their child receives a lifechanging diagnosis, when your child dies the cycle of a new, and very different grief starts again. In her internationally acclaimed book, ‘On Death and Dying’ first published in 1969 the psychiatrist Elisabeth Kübler-Ross introduced her theory of the five stages of grief, stages which are broadly experienced by the grieving, although not necessarily in a particular order or within a certain timeframe. Indeed, people may often move between stages, or even experience elements of the different stages at the same time. More recently however, David Kessler, a grief expert who had worked closely with Kübler-Ross, added an important sixth stage, which he called ‘Making Meaning’, and in part describes the experience of, or desire to create something of meaning for others. It is this sixth stage which shapes Daniel’s life today, of finding (new) purpose. “If you know about the stages of grief then we think of them as five stages of grief, but there’s been a sixth stage added somewhat recently, which is purpose, or meaning making, and I kind of feel like that’s where I’m at with rare disease advocacy work.”

“I had a background in film, and so I began to tell his story as a blog post. As that seemed to resonate with people, I thought that maybe the story should be a film too, and that sort of put a whole bunch of things into motion.” Around six months after Lucas passed away Daniel took on the role of Director Of Community Engagement for Global Genes, a role about which he is passionate, and to which he can bring both a depth of personal experience and a broad breadth of knowledge. As part of his role he works with families, or patients themselves, that are dealing with a rare disease. He explains that for him there were several reasons that this role felt like it was the right fit at the time. The first, quite simply, was that he could now offer to give the role his time and focus in a way he couldn’t have before. “The sad, practical reality of losing Lucas and the caregiver responsibilities I had meant I had time. Previously I needed to be my own boss, I needed to keep my schedule, and to be flexible. Without that caregiver role, I realised I could be available for a working week, and the possible travel that a role with Global Genes comes with, for conferences and things like that.”

MY LIFE

Photograph by Yoksel Zok, Unsplash www.samebutdifferentcic.org.uk

About Menkes Disease Menkes disease (abbreviated to both MD or MNK) is also commonly known as Menkes Syndrome, Steely Hair Disease or Kinky Hair Disease. MD is a rare, inherited, neurodegenerative genetic disorder caused by mutations in the ATP7A gene which regulates the metabolism of copper in the body. The mutation impacts the way in which the body can absorb and process copper, meaning that copper accumulates at abnormally low levels in the liver and brain, but at higher-than-normal levels in the kidney and intestinal lining. MD typically affects more males than females, and presents soon after birth, although babies will often have appeared to be healthy for the first weeks of life. Children with MD often have distinctive sparse, kinky hair, with a ‘steel’ colour giving rise to some of the names used. However, the main symptoms can include seizures, low muscle tone (hypotonia), growth failure, developmental and learning disabilities and an overall poor quality of life. The disease is both progressive and lifelimiting. The current average life expectancy is around 3 years without early treatment. Current treatment focuses on treating the symptoms of the disease, as there is no cure, and to be effective treatment should begin within the first 28 days of life.

Deciding to work with the rare community was a choice, made predominantly due to his related experience, and the opportunity to work in a supportive, positive, and affirming way. “I made a choice about that, it felt right. I know that it sometimes occurs to people that it may be overwhelming for me, for someone in my situation. Instead, I think I find encouragement in it, or comfort in a way. It’s a little bit of Lucas’s legacy. It’s a little bit of what comforts me.” Over the last year he has found himself making a shift towards working in a more direct way with grief and grieving. From setting up a panel at the 2022 Global Genes summit that discussed the ways in which we can come together as a community to grieve to leading a panel discussion on grieving, either a death or a

diagnosis, at the 2023 summit. He also hosts a regular zoom call for those who have lost a child, whether recently or many years ago, and who want to have a space to be with those who truly understand. “There’s no agenda, there’s no topics, it’s just whatever people want to talk about… I always tell people, ‘step 1, you have to find your people,’ and when it’s a rare disease, for example, then you want to find other families dealing with that syndrome, as they are probably your best guides and community. Then, after losing Lucas, I realised my community is now a subset within the rare disease community, it’s the people with rare disease who have lost a child.” As well as his work with Global Genes, the DISORDER Channel means that Daniel can continue to work

There is a secondary, less severe form of MD that begins in early to middle childhood which is called Occipital Horn Syndrome. The Menkes Foundation socials: Global Genes socials:

Lucas DeFabio in a scene from the film “Life After Diagnosis Day” directed by Daniel DeFabio, courtesy of The DISORDER Channel

MY LIFE on raising awareness of rare disease, something which he, along with his family and his partner in the channel Bo, remain utterly committed to. They feel strongly that through documenting and sharing real-life experiences in films they can provide a platform for individuals and communities to be represented, to be seen and heard, to advocate, to innovate and to take action. “Not everyone is comfortable telling their story publicly, but if you are it will not only benefit you, it will benefit others. Those benefits can be unexpected, you never know who finds you and might suggest ‘oh, this might be something we could work on together’ or ‘this might be of help.’ Without that you are more likely to be alone, and that’s one of the worst ways to try to deal with this life.” For all of us truly understanding the reality of someone else’s experience is hard, but if we can share our story it can at least allow people

the opportunity to try to learn, and to gain a better understanding. Also, as Daniel explains, in doing so we can give people some hope. “I called my first film on Menkes disease ‘Menkes Disease: finding Help and Hope’ because at the time - and this is still true for so many rare diseases, if you go on WebMD or Google you only read really bad news… and yet, some good things will still happen. I didn’t want to sugarcoat anything, but I did want to provide the context. I had to slowly learn that as bad as this situation seems to be, or the prognosis is, there’s still going to be joy in this life. I wanted to put some of that on screen, so that when you searched Menkes disease you didn’t just find the bad news on WebMD, you also found the context of real families going through it and saying ‘we get to live this life’, and you know some of it is really hard and terrible, and some of it is amazing and full of unexpected joys.”

Contact info for Menkes Disease: Global Genes

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Menkes Foundation UK

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The Menkes Foundation

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Contact info for Daniel DeFabio: DISORDER: The Rare Disease Film Festival

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The DISORDER Channel

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DISORDER Rare Disease Films YouTube

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What we’re into

ART & CULTURE

PODCAST REVIEW The Rare Life Podcast The Rare Life Podcast was launched on the 29th May 2020, a date chosen because it was also the second birthday of Kimball, the son of the podcast creator and host Madeline Cheney. As the mother of two children, it was the birth of her son that unexpectedly changed everything and set Madeline and her family on their rare journey.

Photograph by Huey Ann Photo. Design by Lorie Ann Warr. Visit the Rare Life website

The podcast is now into its eighth season, with over 139 episodes aired to date, and deals with a huge range of topics relevant to the world of rare medical conditions. The episodes often include guest speakers, who bring their own experiences, insights or professional knowledge and offer interesting perspectives on the topics at hand. Whilst the podcast is an American one, and some of the more specific details about medical care might not apply to those living elsewhere, the experiences and voices still resonate. It is, to borrow Madeline’s words directly, “a podcast that supports and loves parents of kiddos with rare diagnoses and conditions… We talk about the hard stuff, which is actually so uplifting, and validating.” If you’ve not yet listened to any of the Rare Life podcasts, we highly recommend that you do! You might laugh and cry, and you will almost certainly find stories that echo your life and your experiences, which can be so important for those in the rare community to help us feel seen and heard.

BOOK REVIEW Twelve Moons: A Year Under a Shared Sky by Caro Giles Following the lunar calendar this beautiful and moving book tracks the ever-present guiding moon over the course of a year. Written as a memoir, Twelve Moons introduces us to the lives of Caro and her four daughters: The Mermaid, The Whirlwind, The Caulbearer and The Littlest One. Set in Northumberland their stories are told against the backdrop of their surrounding landscape, of the wild peaks and hills, of windswept beaches, of the surging sea, but also against the domesticity of a family home overlooking rooftops, a small

front garden and an alleyway full of washing. The book is many things, it is a book about the challenges of being a single mother, about the realities of mothering, and a mother’s love. It is also about what it means to become a parent carer whilst trying to navigate the difficulties and complexities of healing your newly severed family. The story covers mental health, living with anxiety and the episodes of acute obsessive compulsive disorder (OCD) it can bring. At its heart it is about the pain of watching your child fight to live, to try to feel safe in a world that feels terrifying, and in which they drift unmoored and isolated, feeling cast off by their difference. It reflects on the challenges of fighting for the right diagnosis for your child, and the care and educational support that it promises to unlock for them. It describes the sheer overwhelm that can come from dealing with multiple professionals who are there to help you, but in truth only seem to make you feel judged and alone. What I loved most about this book is that at times it felt like a celebration of nature, and the healing and restorative power of the sea, and at other times like a deeply personal insight into the intimate heart of a family, of a mother always forging forwards with her tribe of girls around her. Visit Caro Giles’ Instagram page

FILM REVIEW Invisible Interviews, the new NPUK (Niemann-Pick UK) film series We have previously reviewed the wonderful animated short film ‘Invisible Manners,’ which was released back in 2021, so we loved getting the chance to watch the ‘Invisible Interviews’ documentary series, created as a companion piece to the first film. Written and directed by John Lee Taggart, the award-winning writer and director behind the first film, he has once again worked with NPUK to create four individual short films, each narrated by the actress Sheila Reid, and featuring a beautiful animated opening sequence created by the animator of the first film, Lingxi Zhang. The series starts with Graham’s story, followed in turn by Nadia, then Hollie and concludes with Alec’s story. Each film tells not only their story but touches on the lives of their loved ones too. Every interview is conducted in a lovely, relaxed, friendly and accessible way, and the finished films include those all-too-real snippets where things don’t go quite to plan; a mobile ringing mid-question, a dog intent on inspecting the camera just a little bit more closely, so the overall effect is to make what could be heartbreakingly sad conversations a joy to watch. Despite the pain of bereavement, the fear of what’s to come, the honest and sometimes brutal insights into what a life lived with Niemann-Pick type 2 can look like, this is ultimately an uplifting series, in equal parts entertaining and inspiring.

You can watch them here 32

ART & CULTURE

BOOK REVIEW Leg: The Story of a Limb and the Boy Who Grew from It by Greg Marshall Greg Marshall grew up with a limp, never knowing that at 18 months old he had actually been diagnosed with cerebral palsy. Instead, his limp was explained to him as ‘tight tendons’ by his parents who always encouraged him to do his best and to never give up. It was only when he was almost 30 years that he discovered his diagnosis. This brilliant memoir, which is written with humour, poignancy and honesty, tells the story of a boy and his family growing up. Greg’s family is far from typical; his mum has non-Hodgkins’s lymphoma, his dad has ALS (amyotrophic lateral sclerosis, also known as motor neurone disease), he has four siblings, a limp, and is also hiding a secret from the world, that he is gay. So many of these things might be considered difficult, or lifechanging, yet for the Marshall family it was simply their life. What shines throughout the book is love. Love and admiration for his family, particularly his parents, and the love that is given in caring for his father. The grief and loss after his father’s death is captured beautifully. In places the book is quite graphic, dealing with openness and honesty with sex and other bodily functions. Ultimately the book touches on life, love, loss and the grittiness that is life, bound throughout by Greg’s humour which gives rise to many joyful, laugh out loud moments. Visit Greg Marshall’s website

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Hasselblad Heroines In conversation with Ceridwen Hughes

Tim Booth from the band James live in concert Photograph by Ceridwen Hughes 34

MY LIFE

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Ceridwen Hughes Photograph by Huw Talfryn Walters “There are so few women professional photographers, and the Hasselblad Heroine photographers are amazing. I’ve met a few other photographers through this and it’s been so nice because they’ve been really supportive, we can ask each other questions and chat about things which is really, really important.” When photographer and director of Same but Different Ceridwen Hughes (Ceri) talks about what it has meant to her to be chosen as the final Hasselblad Heroine for 2023 her quiet pride is evident. Whilst the name Hasselblad has undoubtedly widely become synonymous with iconic, high-quality cameras and photographic equipment, they are also renowned within the creative arts community for their support and patronage of photographers and photography. Initiatives 36

such as their Hasselblad Ambassadors or hugely well-regarded competitions, including the Hasselblad Masters, offer exciting opportunities for both ‘professionals, as well as aspiring newcomers, the chance to make their mark in the world of photography.’ The annual Hasselblad Heroines, a celebration of female photographers, was introduced in 2019 with the aim of ‘shining a light on talented female photographers from around the globe as they make their mark in the photographic industry.’ Each year several ‘exceptional female photographers’ are selected through a nomination process that is open to the public, and who the company feel ‘demonstrate unparalleled creativity, innovation, and a distinctive visual narrative.’ Once selected each of the photographers are invited

to create a body of work using Hasselblad cameras which they are loaned. These exciting new images are then showcased both through the company’s news updates and across their social media platforms, before being included in the online Hasselblad Heroines gallery. Through highlighting their work Hasselblad hopes to encourage upcoming generations of female photographers, and to encourage the world to join each photographer on ‘a profound journey through their captivating photography and inspiring stories!’ It is perhaps surprising that Ceri’s journey as a photographer only began in 2014. “The first time I properly picked up a camera was at a James concert; my brother-in-law is in the group and I asked if I could have a photo pass. I knew nothing about photography, but I’d just got my first DSLR and I thought it would be exciting. When I got into the pit with all the proper photographers, they were so kind, I was asking them questions like what settings to use, and before the group came on, they explained what they did. I absolutely loved it, I really, really loved it. It’s so challenging because you’ve only got the first three songs, the light changes constantly, you don’t know where anyone is going to be… so in a way it’s a really brilliant training ground! So, I did that first photo shoot that was purely for pleasure, and I really liked the photos that I created.

MY LIFE And because that meant that I had this tiny body of work I then thought ‘why don’t I ask for Photo Pass for somewhere else’… I got a pass for a David Gray concert, and it just grew from there.” Initially Ceri did a lot of concert photography, learning a huge amount with each gig, and becoming ever more clear that photography was what she was passionate about, a way of expressing her creativity and imagination. Prior to this her background was in marketing, where for years she had written detailed briefs for the photographers she had employed to create the images she visualized for her campaigns. Becoming a photographer changed everything she explains, as it “gave me that control over what I wanted from a creative element” in a much more meaningful way. Ceri and her husband Phillip have two sons, Theo and Issac, and as a family love nothing more than to travel, discovering new landscapes and cultures. As the boys get older, she has put down her camera during these trips and focused instead on enjoying their increasingly precious time together before the reality of university, of jobs and of independent adult lives makes these trips a memory. It is because of Isaac that Ceri’s photography took a perhaps unexpected turn, ultimately leading her to found Same but Different. Isaac was diagnosed with Moebius syndrome when he was just 11 months old. Over the years it became apparent to her that people made judgments about who

he was, and what he was capable of based simply on his appearance. As a parent it is hard to watch whilst the world fails to see your child for who they are, seeing instead only a visible difference, or a disability perhaps, and allowing that to tell them your child’s story. For Ceri, “one of the things that upset me was the fact that when he was little any school photographs always looked awful because the photographers just did not understand how to deal with facial paralysis. You might think that somebody who doesn’t have a very animated face would be easy to photograph, but actually it’s really difficult. And because of that I sort of thought that ‘nobody sees Isaac for who he is, they just see this terrible photo.’” Reflecting on those early days, and why she founded Same but Different Ceri explains that she realised she could be part of the change she wanted to see, that she could actively engage with, and use the arts to give people the opportunity to see the person behind the rare disease. “I had this sort of lightbulb moment when I realised that it would be a perfect opportunity to combine my marketing background and photography. Initially it was just with the premise of doing portraits of children, focusing on the child and not the condition, so that you could see the person behind the condition. The Rare Project was incredibly well received, it was ridiculous how far it went, the press coverage was immense.” Today you only need visit the Same but Different website to see the breadth and scope of work; from a series

A snowy scene in Iceland Photograph by Ceridwen Hughes www.samebutdifferentcic.org.uk

of visual campaigns using photography exhibitions, videos, and films through to podcasts, articles and Rarity Life magazine. Crucially, Same but Different not only share the stories of the people they portray but support the community through their RAREhub services which include the groundbreaking Rare Navigator role. The lack of support that her family experienced in Ceri’s mother’s distressing final days before she passed away inspired her to begin work on a new creative project, looking into ‘What matters most?’ to those who are living with reality dying. The aim of the project is to raise awareness and to highlight end of life care, to encourage discussion around death and dying, a subject that is often avoided until it is too late. The arrival of the camera and equipment from Hasselblad as part of the Hasselblad Heroines project has meant that she has been able to use them to photograph people who have been given a terminal diagnosis along with their loved ones and care givers. Over the years it became clear to Ceri that it is “harder to get people to engage with portraits of adults. As a lot of the work we do is about getting people to want to know more, we’ve moved on to more complex scenes, to more scene-based imagery. It’s all about trying to encourage curiosity, so that people want to know more. That’s why, with ‘What matters most’ it was really important to have the portraits of the people 38

A monkey in Costa Rica Photograph by Ceridwen Hughes

who took part. It was even more important to have scene-based images that captured them in a way that encourage people to want to know more about them.” The world of photography and the photographers who capture the photos that matter are as varied as the world itself: From candid shots captured by an amateur photographer to highly technical, innovative, and groundbreaking photographs taken by a photographer at the height of their game. The photographs which have changed the world are the ones which offer a window into a moment, a moment which captures and distils the powerful narrative within. Many of these iconic images have been captured by Hasselblad cameras, and for Ceri it is both the opportunity to use a Hasselblad camera

and the recognition and honour of being chosen as one of the select few Hasselblad Heroines that is hugely meaningful to her. “When I first started doing photography, I’d told someone I knew about my plans and he said to me ‘you know, unless you go to college and learn it properly you’ll never get anywhere, or do anything with it.’ It was just the most negative comment and at the time it was really disheartening. To me, it’s not just about the technical photography, it’s about passion, and also having an understanding of what I want to create. I spend a huge amount of time researching and planning before each project. Going to a college or university to study photography is great, but that wasn’t my route, and this incredible opportunity validates that.”

MY LIFE

About Hasselblad

About Moebius syndrome

In 1841 in Gothenburg, Sweden, Fritz Wiktor Hasselblad established a trading company, F. W. Hasselblad and Co, which imported supplies such as sewing machines and other household items. Years later his great-grandson Arvid, who was a keen photographer, went on to set up a photographic division within the company. Its huge success was not necessarily an outcome they expected – in fact their website quotes Arvid as stating “I certainly don’t think that we will earn much money on this, but at least it will allow us to take pictures for free.”

Moebius syndrome is a rare neurological disorder characterised by a weakness or a paralysis (palsy) of multiple cranial nerves, most often the facial nerves, which can mean that individuals with Moebius syndrome are unable to smile, frown, easily form their lips or raise the eyebrows, or even close their eyelids.

Today the name Hasselblad is perhaps the most trusted name within the sector, known for the design and manufacture of high-quality cameras and photographic equipment. For the public the most wellknown, and indeed iconic Hasselblad achievement must surely be the use of their cameras on the NASA Apollo programme missions to the moon. In fact, there are 11 Hasselblad cameras still resting on the lunar surface, as only the film magazines are brought back to Earth after each mission.

The disorder is present at birth which means it is congenital, the exact cause is unknown although whilst it largely appears to occur randomly in most cases there are some cases of it occurring in families which suggests that there may be a genetic component.

Contact Information

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Photograph by Jerry Zhang, Unsplash 39

Photograph by Ceridwen Hughes 40

SBD FOCUS

Cost of living We all know about the cost of living crisis that we as a nation have been dealing with over the past 12 months. The everincreasing, spiralling costs are worrisome for us all. As conversations fill up the media about the crisis and how it is affecting society today, the rare disease and disabilities communities are often neglected in being spoken about. Bringing their unique basic needs that society may take for granted to the front is important, as these needs can come with a high financial burden that can literally save lives. We have spoken to many who live with the struggle daily, managing disabilities and rare diseases with limited income streams against the background

of the current worsening economic crisis. They worry about feeding themselves and their children, heating their homes and getting to essential appointments let alone funding days out for leisure or pleasure or even a simple coffee out with a friend. It is a battle, a constant battle and it is affecting the mental health and the wellbeing of our society, some more adversely than others. We are grateful to everyone who took part in our surveys or shared their stories with us. They have helped us focus on what help is needed and build up a varied picture of how the effects are being felt in our communities currently. We are proud to be launching our new

Multimedia Gallery to help you navigate and get the right advice and support that you need. There are links to help and support under the relevant headings. We have also shared some stories and films from some of our wonderful supporters talking about how the crisis has hit them. You can find it all here: www.samebutdifferent .org.uk/costofliving As ever the story is ongoing as is the help and support out there. If you have received help, know of any tips to help ease the crisis for others or know of initiatives set up to help please, please do let us know. We will add it to our resource page as a link to help others that will benefit also.

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Supported by:

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The

Lingen Davies Cancer Fund

From Colour Runs to Bonfire Balls, Supporting Those Affected by Cancer 42

Up to a few years ago, the main role of the Lingen Davies Cancer Fund was to fund equipment for cancer patients that cannot be afforded within the NHS budget, such as an expensive new CT scanner in 2022. Since COVID Lingen Davies’ services have expanded to support all the ways in which people’s lives are touched by cancer, from education on screening, grants for new equipment to rehabilitation after treatment. Consequently, in recent years the team has expanded rapidly from 4 to 15. We spoke with Emilie Kerr, who has been with Lingen Davies for just over a year as their Events Marketing Co-ordinator, she has always been creative and is interested in photography. “I was going to do Economics [at university] and I can’t think of anything worse now!” Working in the charity sector is ideal for her.

LIVING WITH

Images courtesy of the Lingen Davies Cancer Fund

She supports the fundraising team and Events Organiser by promoting their events far and wide. “It takes a lot to spread the word about all the different things going on.” She is part of the communications team and does a bit of everything from social media, copy for the website and press releases to graphic design and radio interviews. “We are a fund-raising charity, so have a very busy year of fundraising.” They organise large-scale events, between eight and twelve per year, such

as colour runs, cycling challenges, walks, meals and the annual ball. “I think the colour run was my favourite. It’s a 5K colourful fun run. You work your way around the course and get covered in paint. Basically, the fields are like rainbows and it’s just such a laugh. We had 750 people there… Paul Shuttleworth from BBC Radio Shropshire was doing the commentary and fitness trainers doing a warm-up. There was a barbeque afterwards, milkshakes and glitter face-painting. It was such a great atmosphere.” It was so successful that they

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added another colour run in Newtown, Wales, which was enjoyed by all, despite the pouring rain. Recent events also included ‘Pedal the Borders’ in September, which enticed 160 cyclists, joined by Olympian Ed Clancy, to cycle over the border from Shropshire into Powys. In October was the ‘Titty Trail’ for breast cancer, 250 people walking 10 miles. “As we were signing everyone in… at one point everyone was just singing a Lionel Richie song. That was really electric, that atmosphere.

If I could capture those two minutes and relive that, you know.” There was also a bonfire ball, giving everyone chance to get dressed up for a change, with a photo booth, live band and beautiful lights display. “This time of year it’s chaos because we’re selling Christmas cards and the cards are running out of stock. Everyone wants a festive robin!” They also have a Christmas raffle where you can win the donated prize of £1000. 2024 plans are just being finalised, hopefully with the addition of an open-water swim. The colour runs will be included again, as they were key money raisers, as well as the cycling and walking trail. “I think there is something for everyone. Those who aren’t interested in running around a field or cycling, can, like me, just enjoy the food.” 44

A large amount of income comes from these events and Lingen Davies’ own costs are minimal. Corporate sponsors, of all sizes, support the events, for example, there were six sponsors for the colour run. There are lots of different income streams and a good supporter base. Local people help through volunteering, donating or attending an event. “Volunteers go into their local pub and collect a can that’s on the bar and it’d be so heavy…” People also host thirdparty events to raise money, such as coffee mornings and cycling events, raising anything from £300 to £10,000. They receive a lot of donations from funerals too, from families whose loved ones were treated at the Cancer Centre. “So really everyone is very, very generous.” Many people will first hear of the charity when they visit the Lingen Davies Cancer Centre at Royal Shrewsbury Hospital. A lot of patients and their families try to support the Centre in any way they can from donations and taking part in events to volunteering. “There’s one lady that volunteers. She went through a breast cancer diagnosis at a very young age and during COVID, that’s not easy at all. She volunteers for us a lot, she organises

fundraising events. She is the biggest advocate of the charity and for trying to get an early diagnosis as well, getting people to make sure they are checking their breasts.” Other people who have had cancer walk out of the Centre, having been given the all-clear and want to close that chapter of their life, “which is understandable.” The fundraising has reached £1m per annum for the last two years, “which is a massive achievement,” to spend on grants for those affected by cancer. They have an application process and grants committee, who look over grant applications every couple of months that can be £10s to £1000s. Proposals can be for equipment or to run services that benefit cancer patients, such as a new

“I’ve done interviews, like this, with people who are telling me their cancer story and they are so remarkably strong and that is so motivational within your job role. Seeing that really motivates the team to do as much as we can.”

LIVING WITH breast cancer support group in Telford. “We’re now helping people in the Centre. We’re there for them after treatment with rehabilitation, as well as raising awareness. So, it’s sort of all three stages, before, during and after now.” The Lingen Davies Trust run a cancer awareness service, which is about getting into the community “shouting about spotting the signs and symptoms of cancer, attending any cancer screenings and promoting early diagnosis because we know that saves lives.” They train ‘Cancer Champions’, members of the public who go out and spread the messages encouraging checks and early diagnosis, through conversations with family, friends, and colleagues. Large organisations are targeted to have Cancer Champions within their staff. They have trained over 150 cancer champions so far. The initial project was with NHS England. However, they have now separately employed a lady in Wales, who has already trained over 100 champions in Powys.

“As we were signing everyone in… at one point everyone was just singing a Lionel Richie song. That was really electric, that atmosphere. If I could capture those two minutes and relive that, you know.”

more people.” There are a lot of smaller things that are supported, such as a knee block for radiotherapy. “A patient actually ended up giving us a donation to buy a new block so other patients don’t have to wait, improvise or be uncomfortable.” Cold caps are funded for chemotherapy too, to help people retain their hair. They also recently funded a pathology station for cutting small pieces of tissue used in diagnosis.

people’s organs, and basically outlines them, in preparation for radiotherapy treatment, saving specialists’ precious time. “I think on a brain tumour patient, they said the average time was about 55 minutes to an hour, it takes a lot of time. Ultimately that has freed up their time so they can allocate it elsewhere, see

Some patients need to be isolated in their own rooms, as they are susceptible to infection. The Lingen Davies has funded smart televisions for the eight isolation rooms on the oncology ward, so they have entertainment. “They can access all the extra streaming channels like Netflix, and they can also access the internet to

All sorts of equipment are funded. They have recently purchased a piece of technology which autocontours

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contact friends and family. They’ve got a nice big smart TV because they could be in there for up to three months.” Lingen Davies Cancer Fund supports a cancer rehabilitation programme called iCAN to which patients can self-refer. It’s a five-week programme which focuses on getting people back into exercise, mindfulness and good nutrition, followed by an optional further six weeks. Sessions are held in Shrewsbury, Telford, and Oswestry. So far over 300 people have enrolled. It has been so successful that Lingen Davies is independently setting a programme up in Powys. “People often don’t trust their bodies after cancer, it’s all about getting people into exercise and building up their confidence. A 70-year-old lady on the programme said to me that ‘trained professionals actually taught me that my body wasn’t letting me down.’ People don’t necessarily think about those consequences that a cancer

diagnosis has on people.” The programme has unintentional benefits in that it’s becoming a social club, with people bringing in cake and meeting up outside of the sessions. “So, it is sort of friendship through a similar experience.” Lingen Davies Cancer Fund is growing rapidly and running out of space. Besides their office across from the cancer centre at the Royal Shrewsbury Hospital, they have now opened an office in Powys. “It makes it easier for people who are volunteering or fundraising in Wales. They don’t have to come to Shrewsbury to collect things or hand things in.” The time Emilie has been at the Lingen Davies Trust has flown by with lots of events, coloured paint, and lots of meeting people. “I’ve done interviews, like this, with people who are telling me their cancer story and they are so remarkably strong and that is so motivational within your job role. Seeing that really motivates the team to do as much as we can.”

LIVING WITH

Lingen Davies Cancer Fund is the main cancer charity dedicated to supporting the people of Shropshire, Telford & Wrekin, and MidWales. It was founded 45 years ago by Bernard Lingen and Frank Davies. They exist to improve the lives of everyone impacted by cancer in their community. Whilst supporting the Lingen Trust Cancer Centre in Royal Shrewsbury Hospital they also run a range of holistic services designed to deliver cancer relief. Contact the Lingen Davies Cancer Fund Visit the Lingen Davies website

www.samebutdifferentcic.org.uk

MINDFULNESS

a reset for you!

PhotographybybyLaury Photograph Ceridwen Ricquebourg, Hughes Unsplash 48

HEALTH & WELLBEING Mindfulness is the act of bringing our attention to the present moment and allows us to be fully aware of our thoughts, feelings, and sensations, being in the ‘NOW’. It has been around for thousands of years and is a well know part of Buddhist teachings from approximately 400 BCE. It is recognised to be beneficial for mental well-being. In our fast-paced, distractionfilled world, finding moments of calm can seem like an elusive dream in chaotic, modern lives. Add rare diseases, illnesses, disabilities or just parenting into the mix and sometimes finding time to take a breath is a challenge. Achieving a sense of calm and peace is more important than ever today to help reduce stress and anxiety. With the practice of mindfulness, we can bring a sense of peace and focus to our lives and incorporating it into our daily routines can have profound effects on our overall well-being, bringing clarity, calmness, and resilience in the face of life’s challenges. It is something that would benefit everyone, and it doesn’t involve sitting and meditating for hours. We will show you simple tips and ways to be mindful that can easily be adapted to your busy daily lives and do not take hours to achieve. By all means, if you want to meditate for a longer period, you can, but little and often will also help!

Mindful morning start: Before jumping into your daily activities, take a few moments to set an intention for the day such as being more focused, kind, or patient. Close your eyes, take a deep breath, and reflect on how you want to be that day. This can be done before you even step a foot out of bed. Take a break: Throughout the day, give yourself mini breaks to check in with your body and mind. Stand up, stretch, and take a few deep breaths. Notice any tension or discomfort in your body and release it with gentle movements. Use this time to recentre yourself, recharge your energy, and refocus your attention. You can do this anytime and anywhere, on your commute, at the supermarket checkout or even when making yourself a cup of tea.

Engage in mindful eating: In our fast-paced world, we often consume meals hastily, for example, a grab-and-go meal deal lunch from a supermarket. We pay little attention to the sensations and tastes. We all usually eat meals and snacks throughout the day, so enjoy it and fully appreciate the crispness of the next apple you eat or the warming sensation of the next cup of tea you are drinking. Take the time to notice the texture, aroma, and flavour of each mouthful. This simple act of mindfulness can not only enhance your enjoyment of food but also promote healthy digestion and weight management.

Photograph by Alice Pasqual, Unsplash 49

Cultivate gratitude: Practicing gratitude can profoundly shift our perspective and enhance our well-being. Take a moment each day to reflect on the things you are grateful for, whether big or small. It could be as simple as a beautiful sunset, a supportive friend, or a delicious cup of coffee. By acknowledging and appreciating the positive aspects of your life, you will cultivate a greater sense of contentment and joy. This conscious practice can help counteract negativity and foster a greater appreciation for life’s blessings.

Observe your thoughts and emotions: Mindfulness is not about suppressing or controlling our thoughts and emotions but about observing them with nonjudgmental awareness. Whenever you notice a thought or emotion arise, simply acknowledge it without getting caught up in its story. Over time, this practice allows for greater emotional intelligence and resilience. Be present in everyday activities: Incorporate mindfulness into your daily routines by fully engaging your senses in the present moment. Whether you’re showering, doing household chores, cooking or shopping, bring your attention to the sensations, sounds, and smells you encounter. Feeling the soap on your body, or the smell of furniture polish, let them into your senses and acknowledge them. This can transform mundane activities into moments of heightened awareness and presence.

Encourage your creativity: Take time out to allow yourself to be creative in whatever way you choose. Journal your daily positive thoughts, sit with a colouring book or get out and about with your camera or phone. Whatever you choose, be in the moment, and focus on what you are doing, if your mind wanders bring it back to your task and the simple enjoyment or contentment in what you are doing.

Photograph by Nathan Mcdine, Unsplash 50

Photograph by Cam Morin, Unsplash

HEALTH & WELLBEING

Be technology mindful: In the digital age, our lives are intertwined with technology, often leading to distraction and disconnect. Practice mindful technology usage by setting boundaries. Regularly take breaks from screens, try to establish tech-free zones if you can, and engage in activities that foster human connection wherever possible. Use the time you are tech free to engage in activities that bring you joy, such as reading, spending time in nature, or engaging in hobbies. By consciously choosing to disconnect, you create space for increased focus, creativity, and connection.

Photograph by Guilherme Stecanella, Unsplash

Embrace imperfection: Mindfulness invites us to meet ourselves exactly where we are, without judgment or criticism. Embrace the imperfections and challenges that arise in your life, knowing that they are opportunities for growth and learning. Practice self-compassion by treating yourself with kindness and understanding, just as you would a dear friend.

Finally rest and re-set: Get into bed, get comfortable and close your eyes. Put the day’s activities out of your mind, they have happened and can’t be changed, and tomorrow’s activities are to be dealt with tomorrow. Right now, focus only on your breathing, inhale deeply through your nose and exhale through your mouth slowly, feeling your chest rise and fall. Letting go of tensions in your mind and body, relaxing your muscles consciously from the top of your body to your toes. If your mind wanders bring it back to focusing on your breathing. There are many excellent apps available that can take you through a guided meditation that can also help you be in the moment, relax and fall asleep.

Photograph by Gregory Pappas, Unsplash www.samebutdifferentcic.org.uk

LOVE IS NOT RARE Finding extra hours to care in Singapore In conversation with Francesca Khor

Photography by The Love Studios

LIVING WITH spots. They get little tubers all around the heart, in the soft organs… in the brain, the kidneys, the abdomen, sometimes in the eyes. Then they get physical ones…like benign tumours”. It took a while to receive the genetic confirmation as it was during Covid, and they couldn’t send the bloodwork to San Francisco. However, after all the tests they already had there was not really any alternative diagnosis.

Image courtesy of Francesca Khor Francesca lives in Singapore with her husband, and had a busy life as a General Manager for SalesWorks and looking after her daughter, Penny. Ellie then came along to complete their family in September 2019. Francesca noticed immediately that Ellie had white spots on her skin, though initially thought she was just very fair. She pointed them out to a doctor during Ellie’s routine vaccination, who dismissed it as a rash. Luckily, three months later, an astute doctor at her clinic realised it was something very different. Ellie had several tests under general anaesthetic when she was about four

months old; including electrocardiography, biopsy, magnetic resonance imaging (MRI), positron emission tomography (PET) and computerised tomography (CT) scans. This pretty much confirmed a diagnosis of tuberous sclerosis complex, prior to genetic testing. Francesca had to Google to spell the name right. “The worst thing a parent could do is look on Google to find the right spelling of the condition. They’re not good at selling the good stuff”. “Tuberous sclerosis complex is basically a disease where your body is missing the ability to pause cell growth. So that’s why it’s called tuber, you know, like the potato, the little white www.samebutdifferentcic.org.uk

Following a few months of grief, anxiety and isolation, Francesca decided “we just need to figure it out” so she registered as a beneficiary of Rare Disorders Society Singapore (RDSS). Initially this was overwhelming, and she took little notice of what they were doing nor participated in the group chat. Later, she became a committee member, started to contact other families, and was inspired by people’s strength in tough situations. Francesca works fulltime, so has limited hours to commit to RDSS. She sometimes multitasks whilst waiting for the children’s

Image courtesy of Francesca Khor 53

enrichment school to finish or works in the evening and weekends. “I have sent so many messages out at night I have been blocked on social media!”. She attends events when she can at weekends or during annual leave. Francesa stopped running the online shop at night, which she had started during COVID. “I was packing boxes at eleven o’clock and I am like, this is not the life I want”. The social media channels she was using evolved into ways of learning and communicating about TSC. It started off with photos and then videos. “I realised that by publishing what was happening and how I felt, it was my outlet”. She would share good news and bad news and developed regular contact with a few mothers. “You don’t need one hundred people to be a community” Francesca adds. As Singapore is so small it is hard to find another family with the same rare disease, including TSC. “You realise it’s so many…they’re the only one in Singapore who have that disease”. Also, the prevalence for TSC is higher in Australia, US and the UK. The American TSC Alliance is very informative, as are families with other rare disorders. Francesca is pleased to now have nine TSC families in her chat group, though some are not based in Singapore. There are several intercountry differences, for example, between the health insurance structures and the government support.

to progress in their careers or even work at all, and there is a long way to go for companies to accommodate their needs. Raising a child with rare disease is costly and the government does not cover all the expenses. Even if one parent stays at home there is the expectation that they would still be able to afford medical bills of $20,000 or more per month. Carers may also have difficulty getting a break, as hiring professional nurses to care for your child overnight can cost hundreds of dollars. Many people in Singapore have a domestic helper from Indonesia, the Philippines or Myanmar. However, they tend to be very young and it’s a lot to expect of them to help look after a child with a rare disease. Medicines are much more expensive in Singapore than larger countries; due to the small population there is no volume discount for the pharmaceutical industry. “Firstly, you’re rare and then you’re rare in a very small country”, Francesca adds. For some medical interventions there is public healthcare, but the very expensive private healthcare uses the same doctors. The costs for medications, interventions, clinics and treatments take a toll on the family. A lot of the families discuss these issues with RDSS. Some families crowd fund for therapies costing millions of dollars, which may be essential for something as fundamental

There are also differences between Singaporean and Western cultures - rare disease can be very hidden and private in Asia; Francesa added “It’s sometimes a bit taboo”. Some families have not told their own family members. It makes it difficult to share stories and experiences. Flexibility in the workplace was not as advanced in Asia as in some Western cultures, though leapt forward during Covid. However, some companies are pushing for everyone to return to the workplace. It’s very hard for caregivers 54

Image courtesy of Francesca Khor

LIVING WITH as being able to walk; others move countries, which has its own challenges. One example of a medicine not covered by public healthcare, for Ellie, is the medicine used for little red spots on her face. While these spots are non-life threatening, they can lead to bullying. The medicine for these costs $1,800 for 10mg and must be shipped from overseas. “We might have to sell a kidney each to buy the face cream…if you had insurance in Japan, you could get the same cream for a couple of dollars”.

told the doctors that she only wants Ellie to have essential MRI scans, as she is not keen on her having regular general anaesthesia when she is so young, furthermore, there are the high costs involved. “There will be times when you have to put your foot down” she says. The community Francesca now knows with TSC are supportive. They are mothers with young kids, figuring things out – for instance, how to support the children to develop speech.

Ellie needs medication for seizures and epilepsy, which she has been taking twice a day since she was about nine months old. Otherwise, Francesca says “you would see her walking and then just stop. She’s not responsive to you, then when she snaps out of it, she forgets what she was doing ten seconds ago”. The doses need to be increased as Ellie grows. However, to keep the doses down, Francesca does not escalate them proportionally with every weight increase, saying “You have to follow your gut”. Due to her medication, Ellie can’t eat certain fruit and her older sister, Penny, helps monitor this - she is the “Orange Police!”. Francesca has also

Photography by The Love Studios www.samebutdifferentcic.org.uk

However, there are not enough examples of what happens when they are an adult or what the treatments are. Facilities superficially appear very good in Singapore, like the number of disabled toilets. However, it gets more difficult for older children and adults. “How do you change a teenage boy’s diaper? It gets very cramped then. These families just don’t go out”. It is important to take into account what is needed to support families at all stages. For their annual family day, RDSS ensures everything is considered - from how people get there, whether there are enough power sockets for their equipment, to making sure medical staff are on hand. RDSS tries to build a community to help the caregivers. The network supports everyone around the child; which could include the parents, grandparents and domestic helpers. RDSS also have a department for research and education. The RDSS team visit primary schools to facilitate education around children with rare disease and their needs. The digital footprint Francesca has created on TSC through RDSS, and her social media channels, is also a useful resource to share with teachers and friends who need to learn about Ellie’s needs. Ellie is doing well currently and has passed her developmental milestones. Typical of her peers, she is into the movie ‘Frozen’ and received princess shoes for her birthday. She knows that she has a condition and must take medicine, though doesn’t fully understand it yet. Francesca, like many rare disease mums, worries about what life will be like for Ellie when she’s older and “It’s what the quality of my child’s life will be when I’m gone”. 56

Tuberous Sclerosis Complex Tuberous sclerosis complex (TSC) is a rare genetic condition that causes mainly non-cancerous (benign) tumours to develop in many different organs; primarily in the brain, eyes, heart, kidney, skin and lungs. It affects around 1 in 6000 people, though incidence varies in different regions of the world. Either one of two genes can cause TSC; TSC1 on chromosome 9; producing a protein called hamartin or TSC2 on chromosome 16 that produces tuberin. Severity of TSC varies between individuals with symptoms including seizures, developmental delay, intellectual disability and autism. Early diagnosis and intervention can help overcome developmental delays; for example, by the use of anti-seizure drugs. Surgery is used to remove accessible tumours, or drug treatment may be used to shrink some less accessible brain tumours. Complications in organs such as the kidney, lung and brain can lead to severe difficulties and even death, if left untreated. Information from TSC Alliance View their website

Rare Disorders Society Singapore Rare Disorders Society Singapore (RDSS) is a charity originally established in 2011 by parents of a child with Pompe Disease. It aims to raise awareness of life-threatening rare diseases with health services, authorities, and drug manufacturers to improve access to sustainable treatments and quality of life. As the only society in Singapore focussing on rare disease patients, they accept and support all forms of rare disease, including those undiagnosed. The society offers financial support to almost two hundred Singaporean rare disease families towards medicines, therapy, lifestyle and home-based learning. It provides emotional counselling, support networks and resources. View their website

LIVING WITH Contact info: Francesca has two Instagram accounts @heytwolittlepeas and @tsc_singapore

Photography by The Love Studios

www.samebutdifferentcic.org.uk

Nothing can prepare you for a

real incurable illness quite like an imaginary one. Contributed by Ian Marchant

In early 2020 I was diagnosed with the bad kind of prostate cancer, the kind you die of, rather than with. I was told that it had metastasised into my bones, and nothing could be done except courses of hormone blockers, which might hold the lesions in my bones in check for a while, but would strip away my sexuality. I found my inner stoic agreeing with Spike Milligan, like it says on his headstone; I told you I was ill. Prior to 2020 I am being unfair on myself if I say I did not have a real illness. It was real but some would call it hypochondria. Health anxiety disorder, they call it now. Nor, I’m certain, are doctors allowed any longer to refer to ‘problem patients’. But that’s what I was. In fact, my GP at the time was doing a PhD on the subject of problem patients, and I became ‘Patient M’. He told me this on my last visit, the one where I told him I thought I was through the worst. When this happened though, or how long it lasted, I’m no longer entirely sure. I lived in Lancaster, I know that at least. I lost somewhere in the order of four or five years of my life to terror, utter screaming shaking nightmarish terror. A ‘real’ illness, no matter how gloomy the prognosis, simply can’t match the horror of my life in those lost years. I remember its beginnings, 1992, maybe? I was in the car, with my second wife and two children (aged 11 and 2). We had spent a few days with some friends in West Wales, and now we were driving home to Lancaster.

We had stopped at the old Little Chef beside the A483 outside Wrexham; it’s a Starbucks now, but I never feel inclined to stop. Without warning, my arms went numb, my chest tightened, my breathing came in gasps, and my head spun. I was hollowed out by fear. I said to my wife, ‘I think I’m having a heart attack. I am, I know I am.’ She’s a nurse, and I’m not sure she was as worried as I was, but the Little Chef staff may have been, because I insisted they call 999. In the ambulance on my way to Wrexham General, the paramedics worked to calm me down. I think I was seen quite quickly; I remember an ECG printout, and a consultant being kind enough to show me my results next to those of a normal readout and talking me through the results. ‘As you can see, Mr Marchant, they map exactly on one another. It’s almost a textbook example of a normal ECG’. ‘But what was it?’ I asked. ‘Have you been playing golf?’ I had played pitch and putt with my wife and pals the day before. ‘Sometimes you get shoulder pain from playing golf; that can feel like a heart issue.’ He was very kind; we all laughed. Then, it happened again, maybe six months later. By this time, I had split up with my second wife, and I was home alone with two kids. I had never been so terrified. I called my soon-to-be exwife; she reminded me of Wrexham, but

MY LIFE

Photography by Ceridwen Hughes from ‘What matters most?’ exhibition www.samebutdifferentcic.org.uk

I didn’t believe it. This time, it was real. Did she come round? I can’t remember. Somehow, once again, I came out of it. She told me about panic attacks, I know that. And, when I wasn’t in the grip of one, I knew that was what was happening. Then it happened three months later, then a month later, then a fortnight later, then every week, then twice every week. I started visiting the doctor. He sent me to see a consultant, who ran the tests, and, once again, mapped my ECGs onto a normal example. My doctor didn’t think there was anything wrong with my heart. He just hoped a cardiologist could persuade me of the fact. Then, one night, I had been somewhere – the pub, perhaps? Or the recording studio where I had been recording an album? I don’t know. What I do know was that it started again; the symptoms of a heart attack, the shaking, the terror, the numbness. I was outside a pal’s house; I knocked on the door and begged for help, and they booked me a taxi and got me home. After that, it didn’t really stop for three or four or five years. A permanent panic attack. I visited my doctor three or four times a week, weeping, begging for help. He was helping as much as he could. He was determined to prove to me that I was wrong. I prayed, night after night, please God, don’t let me go like this. Don’t let my daughter wake up and find me dead, or gone. This prayer was based on a previous experience as one night in 1987, my daughter had woken up and found her mother gone, and me, unexpectedly there. As, a few nights later, I had to tell her that her Mummy had died. She was seven. Her mother had collapsed and died from a brain haemorrhage. You see, the doctor was wrong. I had a heart problem, a deep and serious one from which there was no escape. I had a broken heart. Time, being a healer, did its work, but I really have no idea of how long it took. Three things happened to mend me. Mend me, but like a Japanese bowl which has been treated to kintsugi, the art of mending which leaves the breaks visible. I am clearly not who I once was. My three mends; first, I took my antidepressants. Previously, I’d taken them for a month or two, grown tired of them, and stopped, plunging me

MY LIFE

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back into my nightly hell. I also started taking sleeping tablets. I took them exactly as prescribed – two nights out of three, therefore, I was knocked unconscious, and one night out of three I lay awake in the dark, scared beyond belief. It is little wonder, perhaps, that I don’t like horror films; I lived in one. Second mend – I found a therapist, in my case a Gestalt therapist. She helped me understand what had gone wrong in the far reaches of my childhood to prime me to go off like a bomb. I had childhood convulsions. From the age of 12 weeks, my parents would drop me into a bath of cold water. They were only young; they were terrified that I would die. These days, the treatment for convulsions was to loosen the baby’s clothing, and perhaps mop his head with a cool flannel. I asked my dear doctor for my records- I had been prescribed barbiturates from the age of 8 months. No one meant for me to become convinced I was about to die; it’s just that my parents were, and showed it. My mother never recovered from these episodes; I did, but not until I was in my forties. The third mend? I discovered that I was loved, by God, and that everything was going to be OK. I hate to embarrass a secular society which no longer believes… but what can I do? God picked me up, shook me down, and let me get on with things. I can remember the year 1999. Things started going right. After that, slowly, I could live again. The places where I was mended will always be my weak spots; I will always feel a tickle of fear from time to time when I have indigestion or if I get breathless. But, as I began by saying, when I was diagnosed with incurable cancer, I was prepared, somehow. Symptoms which I had noticed over a few weeks, rather than filling me with fear, prepared me for what was to come. This old pot, broken, and mended, feels ready to hold the inevitable future. 62

About Health Anxiety Health anxiety, which was previously called hypochondria and sometimes hypochondriasis, is an often debilitating anxiety condition that sits within the Obsessive Compulsive Disorder (OCD) spectrum of disorders Those affected by health anxiety live with the conviction, and preoccupation that they have a serious illness, or they have the fear of developing a serious illness. The person experiencing health anxiety may fixate on any type of illness; a common example is fear they have/will get cancer. For support visit:

About prostate cancer (from the Prostate Cancer UK website) The prostate is a gland which sits underneath the bladder and surrounds the urethra. The prostate’s main job is to help make semen. The most common prostate problems are an enlarged prostate, prostatitis and prostate cancer. Prostate cancer can develop when cells in the prostate start to grow in an uncontrolled way. Some prostate cancer grows too slowly to cause any problems or affect how long you live, because of this, many men with prostate cancer will never need any treatment. But some prostate cancer grows quickly and is more likely to spread. This is more likely to cause problems and needs treatment to stop it spreading. For support visit:

Ian is wearing: Shirt: Monument Workwear

View online

Trousers & t-shirt: Bigdude Clothing

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MY LIFE

www.samebutdifferentcic.org.uk

What matters most? An honest, raw and inspiring account of ‘What matters most?’ aimed at improving end-of-life care provision through the experiences of those receiving and delivering care. Through photography, film and written narratives you are introduced to the experiences of those living with dying and the caregivers involved in providing care and support. Over the past year, we have spent time with some amazing people, feeling very privileged to hear about their lives and their experiences with end-of-life care today. It has been moving, inspiring and uplifting alongside it bringing up some issues that many face with palliative care. The project was inspired by Ceridwen Hughes the founder of Same but Different, using her own experiences after the death of her mum Joan in 2020. Joan died at home after receiving a terminal diagnosis and it was her wish to be at home for her last weeks, where she was comfortable, surrounded and supported by her family. Ceridwen’s two sisters Alison and Nicky would be home with their mum. Alison is a nurse and had no hesitation or doubt in being able to provide the care that Joan would need. However, end-of-life care and support were severely lacking for them all. Now the family are dealing with the horrific fallout of Joan’s death from the memories of battling to get support, the amount of pain Joan was left in, and of course, the grief of losing a loved one. It was a catalyst for them 64

to challenge the way palliative care should be, ensuring people walking the same path have a good death. This was the starting point for ‘What Matters Most.’ The project aims to raise awareness and highlight end-of-life care, opening honest conversations between all parties involved. Supported by Marie Curie, Hospice UK and the National Lottery the project will officially launch at the Senedd, Welsh Parliament, in January 2024. It is a multimedia exhibition with photography, film and written accounts that will run from the 13th January until the 16th February. Access to the exhibition will also be online at www.samebutdifferentcic.org.uk/ whatmattersmost. Here you can listen to the stories firsthand in episodes, you can see the striking images and portraits taken by Ceridwen and watch the 40-minute short film that has been produced by the team. We shared the exhibition at the AllWales Palliative Care Conference at Gregynogg Hall in October 2023 and the film was shown at the Hospice UK Conference in Liverpool in November 2023. Both times the feedback was fantastic, and the project has been welcomed. The conversations have started! Of course, the story as ever will not end, if you would like to share your experiences, stories and feedback we will welcome it. Please contact us through the exhibition pages on our website.

A collaborative creative project Same but

Different

View here

SBD FOCUS

Photograph by Ceridwen Hughes

www.samebutdifferentcic.org.uk

Photograph by Daria Dyadkina Taken as part of SMA-Europe, #WeAreUnique campaign 66

LIVING WITH

I am

UNIQUE SMA Europe, creating a better world for people living with SMA

We are delighted to be able to share some insights and imagery from SMA-Europe’s very successful #WeAreUnique campaign. SMA Europe are a brilliant example of what can be achieved when organisations and individuals come together to work towards a shared common goal; ‘together, through greater understanding, we will create a better world for all those living with SMA.’ Spinal muscular atrophy (SMA) is a rare progressive neuromuscular condition that can affect both children and adults. There is no cure for SMA, so for those living with it treatment is centred on stabilising disease progression, and treating and managing day-today symptoms. Of course, what this looks like, or indeed whether or not you can access different medication and/or treatment protocols will differ substantially depending on where you live as there are very real differences across Europe in the way individual countries fund and structure health and social care. SMA Europe is a non-profit, umbrella organisation that works with, and supports 26 patient organisations from across Europe, as well as working closely with several international partner organisations. Their core mission is to ‘bring effective treatments and optimal care to everyone living

with SMA.’ The organisation works in exciting and innovative ways, and through their broad membership of patient-led organisations, they represent a diverse mix of nationalities. This enables them to gain a true insight and country-based perspective of the different experiences and lived realities for those with SMA. As well as their members, SMA Europe have a Board, a small staff team, a few working committees and significantly, a brilliant and committed team of volunteers that act as delegates. Together they work tirelessly to promote their shared mission, united by their motto ‘all together. One goal’ ‘All together’ does not mean the same. In SMA the wide spectrum of how individuals are affected is classified into different clinical types, and symptoms can further vary within this framework. SMA Europe’s new awareness campaign for 2023, #WeAreUnique, was designed hand in hand with their community to show the different faces of SMA, and to introduce some of the diverse and unique individuals from the European community. The campaign featured 11 individuals, and each person was introduced using a striking theme that put them at the centre of their story. The initial image featured a portrait photograph captioned with their name, and the description of who they are, for example, ‘I AM NADYA. I LOVE TRAVELLING.’ Later images shared were emblazoned with the simple yet powerful words ‘My name is Nadya, I am a passionate traveller’ followed by ‘I live with SMA. My condition is rare, I am unique.’ We met with two of the participants, Nadya and Stefan, and share their stories below.

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Photograph courtesy of SMA-Europe, #WeAreUnique campaign

LIVING WITH

In conversation with

“I travel a lot with my mum, we’ve visited so many countries. There are so many interesting places that you can visit. You can feel and understand a country and culture through the language and atmosphere.” Throughout our conversation what shone through most was Nadya’s vibrant and bubbly personality, as well as her deep love of languages and curiosity about the world. Now thirty-seven years old, Nadya was born in a city called Rostovon-Don in Southern Russia but moved with her family to Belgorod at around two years old. The move followed Nadya’s SMA diagnosis and was made mainly so that her grandparents could help care for her, whilst her parents worked. “We moved because my parents needed help, especially my mum, she was afraid of the disease I have, so we moved because my grandparents could help my parents with me.”

and her older brother went to school. “I stopped walking when I was five years old, I couldn’t walk as a normal child, so I needed some help, but I remember that I had the flu and after that I stopped walking, I couldn’t stand up anymore and I started to use a wheelchair.” Growing up in Russia some thirty odd years ago very few buildings were accessible or adapted to include disabled facilities, but her family were determined that Nadya should have the same opportunities as everyone else. So, when she was seven years old, she was enrolled in a local kindergarten for a year before she started school. Again, Nadya has happy memories of those days, which was clear to see on her face. School too was an overwhelmingly positive experience, with the school working hard to meet her needs as much as possible within the space they had.

“At that time it was very difficult to attend school because the schools were not accessible… but they decided I should attend and that was also a very nice period of my life because I attended every day.” “My parents took me to the school and my brother also helped because he was also there. I was in one classroom and had all the lessons there. My fellow students were very nice and the teacher we had was just an amazing woman.”

Nadya remembers her childhood as a happy and sociable one, being cared for by her grandparents in the countryside and playing with her friends whilst her parents worked

Photograph by Daria Dyadkina Taken as part of SMA-Europe, #WeAreUnique campaign www.samebutdifferentcic.org.uk

Nadya’s mum was determined her daughter would have the best life she could, and even changed her career to become a teacher, going on to work in each of the settings her daughter attended over the years, including university, so that she could meet her physical needs. Primary school unlocked Nadya’s lifelong love of learning, and she blossomed, thriving both socially and academically. When it was time to leave primary school the reality of what it meant to be disabled in Russia became much more real, as she was unable to find a secondary school she could attend and had to continue her education at home. “I had to stay at home and all the teachers came to me and taught me at home because there was no opportunity, or no accessibility after primary school.” The teachers came when they could, but it was far from easy. However, her innate curiosity about the world around her and her dedication to learning meant that she was still able to do well in her exams, and she graduated with honours. This ensured that she had the qualifications she needed to be able to attend university, where she chose to study linguistics and economics. “That was, I think, the best period of my life because that was the life that I always dreamed off. I was at university, I was young, 70

I had a lot of friends, I was like all the girls and boys I started with.” The reality of living with SMA is a hard one, as it is a degenerative disease, the progression of which can be difficult both physically and mentally. Over the years Nadya has undergone painful surgeries, and has had to accept and adapt to a loss of mobility and function resulting in increased reliance on those around her for care and support. Recently she has lost both her beloved dad and brother, two of her biggest champions in life, who had always been there to make things as easy as possible for her. “Step by step, my SMA became worse and worse of course, as this is the disease. It is what I have and I can’t do anything about that… The period from finishing school and studying in the university was I guess the strongest period of my life. I couldn’t walk of course. I couldn’t always help myself, just going to the toilet I couldn’t do, and there were things I was not able to do and I’m still not able to do. But I managed with everything that life could give me.” Nadya is a determined and positive person, who worked hard after graduating from university to carve her place in the world; going on to work as both a language teacher and translator. Her curiosity in the world remains undiminished; she has travelled far and wide with her mum, exploring

LIVING WITH

Photograph by Olga Markova www.samebutdifferentcic.org.uk

faraway countries and immersing herself in local cultures and languages. Her work as a delegate for SMA Europe along with her involvement in the SMA Family Foundation Russia have also introduced her to the global SMA community, bringing opportunities for travel as well as deep and meaningful interpersonal connections that few of us could have imagined in the preinternet world. Alongside digital advancement, recent drug development has meant that the progression of her SMA has slowed, and even improved in some small but important ways. As she explains “I have been treated with a new drug for almost three years now and I feel much better. I am not so tired after the working day.” She continues by explaining that although the improvements she has seen are gradual, the small increased level of independent function they offer is hugely important. As too is the slowing of the disease progression and her overall increased resilience. “It is easier to take a cup full of coffee or tea because it is easier to hold it in my hands, it is also easier to take a telephone call. And, when I go

outside when it is cold it is easier for me to bear the weather conditions. So, I think it’s great result and at least I don’t feel I am getting worse and that’s the best result, that the progression is at least stopped.” Like so many of us Nadya dreams of finding her person, of getting married, of having children, and of living a happy and fulfilled life. Underpinning it all is her hope that she can remain well. “I want to make progress in my profession, I want to improve my skills, my teaching abilities. I want to help my pupils, to make them understand how important it is to know foreign languages and to improve themselves, to realise their dreams. Because teaching is not only about giving them the information I know, it’s much more than that, it is trying to make sure that your students will become great personalities, great people. I feel that that’s my duty to make them good people in life.”

Photograph courtesy of Nadya 72

LIVING WITH

Image courtesy of SMA-Europe, #WeAreUnique campaign

www.samebutdifferentcic.org.uk

Image courtesy of SMA-Europe, #WeAreUnique campaign

LIVING WITH

In conversation with

Stefan lives in Assen in the Northeast of the Netherlands, in an adapted studio adjacent to the house that is still shared by his mum and younger brother Kevin. His dad moved away following his parent’s divorce, although they remain a close family. Reflecting on his childhood Stefan explains that he was raised to understand that he was just like everyone else, “I was always told ‘you’re normal, the only thing that’s different is that you have a wheelchair and the other people walk.’ That was the only difference. I never went to a special school, I just did the normal things in life.” It is well documented that the environments and experiences of our formative years are hugely important in shaping who we are, and as well as having parents who refused to see him as anything other than himself

Stefan also had an older sister with SMA, who like him used a wheelchair to navigate the world. So although his disability might have singled him out as ‘different’ in some ways, he was far from alone and instead had an older sister whose experiences matched his own. Indeed, because of the shared diagnosis with his older sister his parents knew almost immediately that he had SMA, although the official diagnosis of SMA Type 2 was not made until he was around six months old. “I had an older sister, she was two years older than me and she also had SMA Type 2. They diagnosed her with SMA when my mum was about five or six months pregnant with me. And when I was born my parents almost immediately knew that something was wrong, that it was the same thing that my sister had. Because there are certain symptoms in children with SMA that you can recognise. For

example, if you lift a baby up above your head they cannot keep their own head up, the head falls forward. Or they have very shaky tongue, so if they stick their tongue out it’s wobbling. So those are things that my parents noticed in my sister and later on noticed in me.” Family photographs from that time show Stefan and his sister side by side in their wheelchairs, their shared experience of how they moved in the world making it simply their normal, in a very real and tangible way. Devastatingly his sister died following an accident when he was just five years old. Although this meant that he then grew up without his sister there to continue to guide him, he was, according to his parents, determined he was not going to grow up without a sibling.

“We are more than the wheelchair and the disability that we have.” Photograph courtesy of Stefan

Photograph courtesy of Stefan 76

LIVING WITH “After my sister passed away my parents told me that I said ‘I want a new brother or sister because I’m already in a wheelchair, and everyone pities me. And now my sister has passed away and everyone has even more pity for me. And I don’t want to be alone, I want another sibling.’ So, then my brother came along, he doesn’t have SMA and I’m really happy for him, and for that.” Stefan is positive, confident and outgoing, now thirtyfour years old he runs a successful web design company and loves to travel. His dark sense of humour means that he is often to be found making jokes that most people wouldn’t dare to make. Having grown up in a supportive family who dealt with the additional physical support and care he required in such a matter-of-fact way he is comfortable in his own skin, able to ask for help, and can navigate the world independently within the context of the physical support he needs. Until recently he didn’t feel any particular connection to other people with disabilities, indeed he often actively avoided them, because his impression had been that “a lot of people complain, and say ‘I can’t do this and I can’t do that’ and that’s not my point of view, that’s not the way I was raised.” However, everything changed for Stefan just under three years ago when he began www.samebutdifferentcic.org.uk

taking a new medication that had been approved for the treatment of all forms of SMA. This new treatment had been shown, during multiple clinical trials, to have the potential to significantly slow the disease’s progression and, in many cases, improve the strength of individuals with SMA. As Stefan explains “when I was younger, I could pick up a football, I could write my homework with a pen on a piece of paper. Now I can move one index finger and I use eye control to control my computer. So, the progression of the SMA is really shown there, I can’t do the same things anymore that I could do when I was younger. But since I started getting my treatments, I’ve noticed that my hands are getting a bit stronger, my voice is getting better… but the biggest difference that I’m feeling for myself is that my eating is getting better and more safe because my food doesn’t get caught and I don’t choke as often as I did. So, I’m really happy with that!” The other big change in his life has been Stefan’s introduction to both the local and the global SMA community. He explains that after he started treatment his mindset began to change. “I was really interested in how it worked, and how everything to do with SMA worked. I had never really looked at it before, I just accepted the fact that I had SMA.” First Stefan 77

became involved with the national SMA organization in Holland, the Vereniging Spierziekten Nederland, and was eventually invited to become a delegate for SMA Europe when it was suggested that he might be a good fit for the role of a volunteer delegate, “because you like to talk a lot and you have an opinion, so maybe you can do something with that.” He didn’t have to think it over for long because it felt like the perfect fit, combining his love of travel and speaking in different languages. Reflecting back he is clear; “I think it was the best decision I ever made.” Although he is an innately positive person, and one who is determined to find the best in any situation, this does not mean that he travels through life unscathed, the very real issues that many people with a wide range of different disabilities face are ones he too faces. He recounts the story of how, on a recent trip to the US to attend a global SMA conference, unexpected delays to the journey, caused in large part by the airline forgetting his wheelchair in the airport he transited through, ultimately led to him being admitted to intensive care. Despite the tireless work of disability rights campaigners over the years, there are currently no airlines which have made proper adaptations for disabled passengers. “I was sitting in the airplane not being able to eat and drink because I can’t go to 78

the bathroom on board. So, my whole body went into shutdown mode, my blood sugar dropped and my potassium dropped and my whole body just shut down.” The changes and experiences of the last few years have marked the beginning of a very new and different journey for Stefan, leading ultimately to his transformation from someone who was determined not to be defined by their disability to someone who has become a passionate disability campaigner and advocate. He is committed to helping to bring about changes in the world that will help ensure that noone is unfairly limited by

their disabilities, or by their immediate environment. “I was looking at it from my point of view, and like I said before my point of view is that I’m not disabled. It was really easy to look at life like that, but I can understand now that if you live in a country where nothing is adapted then you can’t go outside. Or, if you don’t have a proper wheelchair then I can understand that you feel disabled in that moment.” In joining SMA Europe Stefan has found a way in which he can actively campaign for the world to see what he has always known, “we are more than the wheelchair and the disability that we have.”

Photograph courtesy of Stefan

LIVING WITH

Image courtesy of SMA-Europe, #WeAreUnique campaign

www.samebutdifferentcic.org.uk

About SMA Spinal Muscular Atrophy (SMA) is a rare genetic and progressive neuromuscular condition which is characterised by the gradual degeneration of nerve cells in the spinal cord (motoneurons). SMA leads to progressive muscle weakness and atrophy, left untreated it can result in a very poor outcome. There is a wide spectrum of how children and adults are affected and the symptoms vary from person to person, but SMA may affect crucial activities such as breathing or eating through to more minor motor function issues. *Information based on the ‘About SMA’ section of the SMA Europe website Click here to access SMA-Europe’s tool, OdySMA which overviews country-based access to different SMA treatments. Contact Information SMA EUROPE:

Visit website

Photograph by Chuttersnap, Unsplash

LIVING WITH

www.samebutdifferentcic.org.uk

Making Christmas easier with essential aids & exciting gifts

Photograph by Prchi Palwe, Unsplash 82

HEALTH & WELLBEING

for putting up the decorations... Step Stool with Long Handle

Handi-Reacher

The Step Stool with Long Handle is ideal for helping to put up those high Christmas decorations. The risk of injuries and slips is reduced. A steel frame ensures that it is sturdy, and the chrome finish makes it attractive.

Offering outstanding value for money, the Handi-Reacher is available in three lengths. It is lightweight and has a solid pair of jaws and a robust trigger action. The Handi-Reacher can help to put decorations up out of reach.

Buy Here

for wrapping presents and writing cards... Easi-Grip Pointed Scissors Ideal for anyone with a weak or painful grip, these large Easi-Grip Pointed Scissors are spring loaded so can be used with the greatest of ease and will re-open without effort. The lightweight plastic handles greatly reduce fatigue when in use, whilst the stainless steel blades are pointed for piercing. Buy Here

NRS Healthcare Ultralite Finger Yokes - Pack of 10 This Pack of 10 Ultralite Finger Yokes is versatile, simple and affordable, helping you to hold a wide range of household items from pens and pencils to cutlery. One or more can be used at any one time, each helping to keep the finger stable and the item firmly in place when you are writing your Christmas greetings. Buy Here www.samebutdifferentcic.org.uk

and don’t forget the gifts... Optical Effect Sensory Bag Mirrors are very popular tools for helping children to discover themselves and become familiar with their own face and expressions. The resources in this sensory bag provide a wide range of visual effects including prisms, reflections, gently floating glitter, reflective crinkly surfaces, magnification and coloured tints. Buy Here

Numberblocks Friends - One To Five Meet the Numberblocks One through to Five, the adorable characters from the global TV sensation. This interactive set brings the beloved Numberblocks characters to life, providing a fun and immersive way for children to explore numbers and basic maths concepts. Buy Here

Life Histories Game A multi-purpose board game designed for older people to aid reminiscing, help individuals get to know each other, and facilitate the sharing of experiences. It can be played by 2-8 people, independently or supported by staff. The cards can also be used to inspire people writing their life stories. Buy Here

Photograph by Mel Poole, Unsplash 84

HEALTH & WELLBEING

Remember our faces

Remember our faces Remember Remember Remember Remember Remember our our our faces our faces our faces faces faces Remember our faces Remember our faces Remember our faces Remember our faces Remember our faces Remember our faces Remember Rememberour our faces faces

Remembe Remem Remem Rem Re ReR Remember our name Remember our facesRemember our name

The CdLS Foundation UK & Ireland is part of a World Federation, working to raise awareness of Cornelia de Lange Syndrome (CdLS) within the professions, and providing support for families with an affected person. Our mission: “The CdLS Foundation UK & Ireland is a family support organisation which exists to www.cdls.org.uk www.cdls.org.uk www.cdls.org.uk www.cdls.org.uk www.cdls.org.uk www.cdls.org.uk ensure early and accurate diagnosis of CdLS throughout the Remember our name world, promoting research, and enabling individuals, families, www.cdls.org.uk friends and professionals make informed decisions and plan www.cdls.org.uk www.cdls.org.uk for the affected person’s present and future.” We do this by www.cdls.org.uk organising conferences around the UK and Ireland, where we bring families to meet experienced doctors from around the world who will share their knowledge. We help professionals to cdlsukireland pool information. We bring families together so CdLS people can www.cdls.org.uk meet others of a similar age. We support research into the cause @CdLSUKIreland and effects of CdLS by working with leading universities. We www.cdls.org.uk produce a magazine, information booklets, a website and offer a family support service. Once families are in touch, they are @cdlsfoundationukireland part of an extended global family that will help to guide them.

Remember our www.cdls.org.uk

Remember our name www.cdls.org.uk Remember our

Remember

www.cdls.org.uk

www.samebutdifferentcic.org.uk

www.cdls.org.uk

5 Questions with Jenny Rawling co-founder of The UK Infantile Spasms Trust (UKIST)

Visit the website

Images courtesy of Jenny Rawling 86

Please share a little background about your rare journey with us Our journey with rare epilepsy began in January 2015 when our seven month old daughter Faith started to display some odd behaviour. We had first noticed she was out of sorts over the Christmas holidays – I’d had hopes of handing her over to doting aunties at our family Christmas but she was withdrawn and clingy. She was also ‘refusing’ to sit, having previously been quite happy in supported sitting, and wanted to be held all the time. There are a hundred reasons why a baby can be grumpy and we didn’t think too much about it. In January she became fussy when feeding and would repeatedly unlatch and then cry. She then had an episode in the bath where she repeatedly flung her arms forward and her eyes rolled. We managed to video this and sent it to a couple of doctors in our family circle, who replied very rapidly telling us to take her to hospital. We were so lucky that because of that insight we presented her with that suspicion and were passed upwards to the A&E consultant who arranged admission and an emergency EEG – she was diagnosed and on treatment for infantile spasms /West syndrome within 24 hours of us filming her. The first weekend in hospital was the loneliest I have ever felt – my husband had to return home to care for our older children, and we were found a cot (and a hard chair) on a renal ward, where none of the staff knew anything about spasms. I was prevented from googling as you couldn’t purchase access to hospital Wi-Fi at the weekend, but one of our family found a patient information leaflet on infantile spasms. Reading it, all my hopes or assumptions about the future drained away – the outlook for her sounded terribly bleak, and the figure that one child in five would die before their fifth birthday was devastating. Once we got home we searched for positive stories and support – and found help from online groups based mainly in the USA but nothing in the UK. Those groups were a lifeline through a gruelling treatment process, a relapse, adrenal insufficiency as a consequence of her treatment and our subsequent worries about development.

5 QUESTIONS WITH us met face to face was at our first AGM and the charity was registered in 2017.

How does UKIST work?

What drives you? My way of coping with the diagnosis was to read up on the condition in scientific journals and spend a lot of time in the support groups. I came into contact with other UK families and we set up a UK Facebook group, as we found that a lot of the experiences – particularly of support after diagnosis – were quite different to the US experience. From that group I became aware that many families were experiencing unnecessary delays in diagnosis because of a lack of recognition of the need for rapid referral. A group of parents produced a YouTube awareness video and over a period of a year mulled over the idea of setting up a charity to provide the support, medical education and awareness we felt was lacking in the UK. The first time any of

UKIST is first and foremost about trying to ensure that every child with infantile spasms has the best possible outcome and that their family are supported through what is inevitably a very difficult time. We work alongside medical professionals to produce medical education and contribute to research that will hopefully improve diagnosis and treatment in future. One of our most significant achievements of the last few years was getting infantile spasms recognised as a neurological emergency within the NICE guidelines, so that children with suspected spasms must now be referred to a specialist within 24 hours. Families are offered a network of support that includes rewritten (and more positive) point of diagnosis information, ongoing peer support, face to face family fun days, online therapy and information and a grant scheme to plug the gaps in funding for equipment or therapy for affected children. UKIST is entirely run by volunteers with personal experience of infantile spasms in a family member – so our provision is guided by the unmet

needs of our community. The support and understanding of someone who has been through a similar rare journey is priceless.

If you could offer any advice to other families on their own rare journeys what would it be? Having a rare diagnosis can feel lonely – it’s been so therapeutic for us to connect with others. Despite a very positive outcome for my daughter I’d never wish this journey on anyone, but a lot of wonderful friendships with people I’d otherwise never have met have resulted. Local parents are the best source of information about local resources so it’s worth reaching out to special needs groups – nearly everything useful I found out about from ‘unofficial’ sources.

What do you do for yourself? As a working mum of three I don’t have a lot of spare time! I learned Makaton as part of helping my daughter to communicate at the point her speech was delayed and I now sing (term applied loosely) in a Makaton choir, and as well as volunteering for UKIST I help in the local primary school listening to children read – they always make me laugh.

Rare Navigator Help when you need it

At Same but Different, we strive to make a Our support area of North Wales will be positive difference to the lives of those affected expanded for the time-being and if we by rare diseases. Through our Rare Navigator can’t help you, we will put you in touch Our support area of Northin Wales be Atservice, Same butwe Different, strive to make positive offer we emotional and apractical with our colleagues diseasewill specific expanded for the time-being and if we can't difference to the lives of those affected by rare support and information to individuals, their support organisations. Katy Parry has a help you, we will put you in touch with our diseases. Through our Rare Navigator service, families and all involved in their care, from thecolleagues personal professional in and disease specific understanding support we offer emotional and practical support and point of diagnosis and beyond. of the complexities that organisations. Katy Parry and hasdifficulties a personal information to individuals, their families and all families face understanding and can supportofyouthe in and professional involved in their care, from the point of diagnosis complexities and your difficulties that your families and beyond. Our individualised support and advocacy service navigating way through rare face and can support you in navigating your aims to ensure that each family is able to disease journey. Some of the ways she way through your rare disease journey. Our individualised support and advocacy service access the level of support they require to meet supports families include: Some of the ways she supports families include: aims to ensure that each family is able to access their needs. Our team can help you to access the level of support they require to meet their beneficial services and and can Home visits (whenever • Home•visits (whenever necessary) necessary) needs. Our team can help youequipment, to access beneficial provide helpful information, tools and resources • S upporting families to the understand services and equipment, and can provide helpful • Supporting families to understand choices the information, tools and resources thatofencourage that encourage understanding rare diseases of care thatchoices care that may be available may be of available understanding of rare diseases and how it may and how it may affect your family. • families Helpingtofamilies to access their local • Helping access their local healthcare affect your family. healthcare services services We work closely with national and local health • Liaising with local health and social We work closely with national and local health and • Liaising with local health and social care teams, and social care providers to ensure that our care teams, which may include your social care providers to ensure that our families which may include your Occupational Therapist, and access Occupational Therapist, Speech and arefamilies informedare andinformed have access to have optimum care,to Speech and Language Therapist or Social Worker treatment and services that can assist daily life optimum care, treatment and services that Language Therapist or Social Worker • Working with schools and teaching staff to and increase for increase independence and can assistopportunities daily life and opportunities • Working with schools and teaching social interaction. provide information to support children in to support for independence and social interaction. staff to provide information attending and achieving at school children in attending and achieving • Accompanying individuals and families to clinic more information, at school ForFor more information, pleaseplease contactcontact us on us on appointments or meetings. individuals and families enquiries@samebutdifferentcic.org.uk or • Accompanying enquiries@samebutdifferentcic.org.uk or callcall 01352 757007 01352 757007 to clinic appointments or meetings. Same but Different cic, The Old Chapel, 91 Wrexham Street, Mold CH7 1HQ www.samebutdifferentcic.org.uk

Rarity Life Issue 8

Articles inside

Reaching for the stars

5 Questions with Jenny Rawling

Making Christmas easier

I am UNIQUE

What matters most?

Nothing can prepare you for a real incurable illness quite like an imaginary one.

Love is not rare

Mindfulness - a reset for you!

The Lingen Davies cancer fund

Cost of living

Hasselblad heroines

What we’re into

The sixth stage of grief

Copenhagen capers

SHINE - A Special Olympian’s Journey