Cwtch Magazine Autumn-Winter 2018 by Ty Hafan

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newsletter autumn/winter 2018

our news and stories from tyĚ&#x201A; hafan

celebrating 20 years inside

stories from the music room p.4

ollie's story p.8

every dad has his own mountain to climb p.12

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our news and stories from t ŷ hafan 029 2053 2199 www.tyhafan.org

welcome Welcome to the Autumn/Winter edition of Cwtch! Tŷ Hafan is about to enter its third decade of providing children with life-limiting conditions and their family’s vital support that many would not be able to cope without. The shape of paediatric palliative care has changed immensely in the years since Tŷ Hafan opened as the first children’s hospice in Wales. The charity has moved with these changes and remained at the forefront of paediatric palliative care, standing us in good stead for the future. Of course, none of this would be possible without your support. You are all part of the Tŷ Hafan family. Whether you are one of our incredible volunteers, play the Crackerjackpot lottery, shop in or donate to our shops, set yourself amazing challenges to raise money or send us donations, we couldn’t do what we do without you. Cwtch Magazine is our chance to let you into the world of Tŷ Hafan and share with you a snapshot of the amazing things that your support makes possible while saying thank you to each and every one of you. We hope that you enjoy this edition of Cwtch and it gives you an insight into why everyone associated with Tŷ Hafan is so grateful for your support.

contents stories from the music room...................................................................04 every child has a right to play................................................................06 ollie’s story........................................................................................................08 recharge the batteries................................................................................10 every dad has his own mountain to climb.......................................12 fundraising noticeboard............................................................................14 leave your mark on wales........................................................................15

out wit Back in autumn 2016 we revealed our plans to partner with engineering provider Costain VINCI to design and build a new state-of-the-art memorial garden in the hospice grounds. As is always the case with such an ambitious project, ideas have developed, been adapted and evolved, and we are truly excited by what we are seeing as the project nears completion. The garden has always been beautiful – a tranquil space for reflection and making memories – but now in 2018 there are so many more benefits we can provide to families than we could when the garden was first built. The current memorial garden was completed in 2001 and has been there for over 750 families, but was in need of some TLC and we recognised the need for it to become an even more inclusive and interactive space for all families to spend time.

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"A tranquil space for reflection and making memories"

th the old… Every child that has been part of Tŷ Hafan has their own inscribed pebble placed in the pond in remembrance. To sustain us into the next 20 years, it will be replaced with an incredible bespoke water feature that will provide more space and become a focal point for remembrance within the gardens.

After 20 years of use, we are investing in our hospice and renovating key areas within the building, to include the family flat, ten children’s bedrooms within the Care Wing, communal dining room and lounge, as well as the seven family bedrooms and private family lounge.

Alongside the memorial garden, a new sensory garden is being created for families, currently in care, to enjoy. The garden will include plants, hard landscaping and other garden materials and features selected to appeal to all five human senses with the aim of offering a richer and more therapeutic experience.

By updating and modernising these areas we will create a more functional and accessible set of rooms for the children, their families and our care staff. Currently 89% of the 253 children Tŷ Hafan supports use the hospice facilities and these renovations will improve the quality of their short break care visits for the whole family.

With the garden project due for completion this autumn, we are turning our focus back inside the hospice building and are very excited to announce the next phase of refurbishment.

as many of those families in need as we can, making it all the more important to future-proof our facilities and ensure that Tŷ Hafan can continue to be there for them for the next 20 years.

This project supports people from all over Wales who suffer great disadvantage. As the number of children living with life-limited conditions continues to increase, one of our key priorities is to reach

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our news and stories from t ŷ hafan 029 2053 2199 www.tyhafan.org

stories from the music room Try to name something more universal, culturally significant, deeply personal or socially inclusive than music. The vast majority of us will have been moved by music at some point in our lives, whether through playing, performing or listening to it. It’s joyful, sad, relaxing and cathartic. Music therapy benefits children who use Tŷ Hafan in a number of different ways. It’s used to help improve emotional wellbeing and gives those who can’t communicate verbally a form of self-expression. It helps with social interaction, selfconfidence, self-awareness and concentration. And sometimes, it’s just plain fun! Bang a drum and make a noise or chill out and relax for a bit. It’s something that isn’t medicine or feeding, if only for a short while. Music Therapist, Diane Wilkinson, remembers a couple of her favourite stories:

"When I first started seeing Peter he was in hospital and really quite poorly. So from his mum and dad’s point of view this was something a bit different." “It became obvious very quickly that he responded to sounds. He uses a hearing aid so it’s quite surprising in a way, but he conducts the music, his face lights up, he burbles and talks and chatters and sings. He’s also very physical, so even if he is sat in his p-pod, he’s almost dancing to the music and conducting with his arms and moving. He just really responded well. So when he came out of hospital, I continued visiting him at home and every time he came to the hospice." “He loves his music therapy sessions and it calms him down. It relaxes him. It gives him a huge amount of enjoyment and he loves the feeling and textures of all the instruments and what he can create when he lets loose with them!” “Another really special memory for me was of a child who was dying that I visited over a period of about six weeks. Initially we didn’t know how long we’d be able to visit because he was so poorly and not expected to live very long. But I managed to see him six or seven times.

“He absolutely loved the flute and would listen to me play while he’d hold onto the end of the flute. He had an ocean drum laying on his belly which I felt unsure of seeing as he was so poorly, but he very clearly told me: ‘give me that drum because that’s what I do in this music session and I will hold onto this flute’. And he did, bless him. He held it right until my last visit and he loved it. “He had a CD of me playing the flute when I wasn’t there. He would look for me, he knew it was me but couldn’t see where I was. It was a really special relationship with him and his family. It was also something I was very proud of too, he had a good end to his life and I think music was an important factor in that.”

“He loves his music therapy sessions and it calms him down. It relaxes him. It gives him a huge amount of enjoyment and he loves the feeling and textures of all the instruments"

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Over the last 18 months, Tŷ Hafan has partnered with local choir Vocal Harmony to write, record and release a charity single in aid of the hospice. The single ‘Don’t Look Down’, written by Vocal Harmony’s Musical Director, Bobby Cole, and his song writing partner, Lorraine King, is performed by Vocal Harmony alongside families and staff from Tŷ Hafan! Release date is Friday 30 November and will be available on iTunes, Spotify and all other digital outlets.

Bobby said: "I’ve been involved with Tŷ Hafan for a number of years now. We wanted to do something for the charity that involved all of our choirs including Llanelli, Swansea, Cardiff, and our newly formed kid's choir. Rather than record a cover, we wrote a song specifically for the choir and for the charity to encompass everything that it means to us and the families that use it."

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our news and stories from t ŷ hafan 029 2053 2199 www.tyhafan.org

every child has a right to play National Play Day is always an important day in our calendar. As well as a celebration of children’s right to play, no matter what their ability, Play Day is a campaign that highlights the importance of play in children’s lives. Jemma Tudor is a play practitioner at Tŷ Hafan and she and the play team work closely with our families to tailor play so that they get the most benefit from it as possible. Jemma said: “Play is a right for every child and is one of the most important aspects of a child's development. “It’s especially important for children with life-limiting and life-threatening conditions, as it allows them to express themselves, and helps them emotionally, physically, socially and spiritually.” Jemma’s entire career has involved working with children, from her early days in schools, nurseries and children’s holiday clubs abroad, as well as facilitator in parenting programmes to more recent roles in children’s community health teams, supporting children with complex medical needs. Her role as a play practitioner at Tŷ Hafan is to provide inclusive play activities for children both at the hospice and in the community. She said: “We believe passionately that every child has the right to play, whatever their level of ability. If a child is not able to physically move or join in, that doesn't mean that they can't play – it's just about finding the way that works for them.” Jemma’s first step in planning play activities is to carry out a play assessment in conjunction with the child’s parents or carers, helping them to understand that even though their child may have limited mobility are unable to communicate verbally, they can still use their other senses to develop their skills through smell, touch and have fun through other methods of communication. A personalised play profile is then developed and goes into the child’s bedroom when they visit the hospice. This gives the care team a deeper insight into each child’s personality. Outside of the hospice, Jemma will carry out ten to 12 play sessions with the child, often involving parents, brothers and sisters.

Once the play sessions are over, the child gets a specially tailored play pack which includes development milestones and suggestions on how to get the most out of play to cater for the particular child’s needs. These are used by the families, community nursing team at the child’s home, in respite care or in school. They list activities and ideas for play including how to use sensory skills and how to make stimulating toys out of household items, as well as listing suppliers of specialist toys and equipment. Back at the hospice, families are offered a range of play services both for residential and visiting children. “We facilitate sessions called Stay and Play as part of our Day Care service, and although appearing spontaneous, are meticulously planned”, explained Jemma. “We combine a mixture of play and arts and crafts, and parents are often encouraged to join in. There are also one to one music and complementary therapies on offer tailored to the child’s needs, using a range of specialist sensory equipment and amazing facilities at the hospice like our multi-sensory room, the hydrotherapy pool, soft play area and outdoor playground.” The play team visit families at home and in the community too, providing Family Day Care twice a month and Holiday Day Care, most often in July and August. The sessions give children the chance to gain confidence to try new and different types of play which they may not have experienced before. They can use our play resources and equipment, allowing them to interact together and giving parents the opportunity to meet other families facing similar circumstances to their own. All families using the hospice have access to the charity’s toy and leisure library, so they can borrow larger pieces of equipment and specialist sensory toys that they wouldn’t have at home. Tŷ Hafan’s approach to play is not focused on what a child can’t do, but instead we encourage them to discover what they can do. Our aim is to help families create special memories they’ll cherish forever and enjoy the time that they have together.

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"Play is a right for every child and is one of the most important aspects of a child's development."

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"It’s an absolutely amazing place. They look after Ollie but they look after us too."

our news and stories from t ŷ hafan 029 2053 2199 www.tyhafan.org

autumn/winter 2018

ollie’s story When baby Ollie was born in June 2014, he wasn’t breathing, so he was resuscitated before being put in the arms of his mum, Sophie. She and her husband Sean took their precious new-born son home the next day, but for some reason, they knew something wasn’t right. Back at their home in Barry, Sophie found a sacral dimple at the base of Ollie’s spine, so at eight days old, he had a scan for suspected spina bifida, which didn’t reveal anything. His parents were worried that he wasn’t feeding properly or swallowing and he wasn’t gaining weight. With Ollie having endless trips back and forth to the doctors, medical experts couldn’t pinpoint the problem. But after four long, anxious months, Ollie was eventually diagnosed with Pallister Killian syndrome – an incredibly rare chromosome abnormality that results in complex medical issues. Sophie explained: "For the first 18 months of Ollie’s life, his development seemed reasonably normal but that soon slowed and he started having more and more seizures. Time went on and Ollie continued to be very poorly with constant, severe chest infections and other illnesses.

He was awake all the time at night and I was at the end of my tether with sleepless nights and medical appointment after medical appointment. I really needed some help so I selfreferred to Tŷ Hafan when Ollie was two years old and thankfully we were offered a place. "Although I knew they were going to help us, I hated the thought of a hospice. Everyone hates that word, don’t they? But the moment Sean and I walked through the doors of Tŷ Hafan, we knew we couldn’t have been more wrong. It was nothing like you’d expect. "The first time we took Ollie there for short break care, we both stayed overnight as I was worried about leaving him, but soon all my worries disappeared. I know now how much the nurses love him and take complete care of him. He’s so well looked after I’m happy to leave him there with them. "When we’re there, we just get time to relax, do whatever we want and just be a family – Sean, me and our daughter Summer, who is seven. We live quite close to Tŷ Hafan but going there feels like having a holiday a million miles away from the stresses and strains that our normal life at home brings every day. "Summer loves it as much as her little brother does. She hates it if we go for a short break during the week because Ollie gets to stay there but she has to go to school! She doesn’t want to miss out on the fun. It’s like a holiday for her too.

"When he’s at Tŷ Hafan, Ollie gets the one to one attention from his nurses that sometimes I just can’t give him at home, when there’s so much other stuff I have to do. When he’s in a playful mood – that’s just what he does. He plays. Sean’s mum says he’s like a different little boy when he’s at Tŷ Hafan. "It’s an absolutely amazing place. They look after Ollie but they look after us too. I was going through a really rough time recently, with a close family bereavement and illness. Tŷ Hafan knew things were bad for me so we were offered a short break there, so we could just step back from things. They were just so lovely, offering us practical help and support and a shoulder to cry on if we needed it. Tŷ Hafan is there for all of us." To find out about referring a child to Tŷ Hafan, please visit www.tyhafan.org/refer-a-child.

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our news and stories from t ŷ hafan 029 2053 2199 www.tyhafan.org

recharge the batteries It might feel like a distant memory, but the summer of 2018 was really quite something. Long periods of hot, dry weather meant that escaping to a beach for a few hours felt like a trip abroad. But as we were packing our suitcases to go on our holidays to recharge our batteries, for Tŷ Hafan families like Bridget, eight-year-old Elain and Martha, four, it’s not quite so simple. Elain was born with multiple, complicated heart conditions and a rare genetic disorder and although her condition is currently stable, it could only be a matter of time before it deteriorates. “We have been going on holiday to Tŷ Hafan and using their fantastic services since Elain was one”, said Bridget, from Aberystwyth. “And like most families, the excitement of going on holiday for me and the girls starts when we are packing. It’s so ironic really that we live in a seaside town, yet it’s Tŷ Hafan that is our family holiday”. “I don’t relax at all at home, so for me, the stay at Tŷ Hafan is my only break for what feels like such a long time. When we stay, there are no day-to-day pressures, Martha can just play and enjoy herself and I can feel myself starting to unwind as the days go on. Sometimes I am so run down by the time I get to Tŷ Hafan because I find the real world so difficult.” Beth Morgan, Tŷ Hafan’s Head of Hospice Services, explained that caring for a lifelimited child turns parents into full-time carers and the previous life they once had is no longer recognisable.

“Some of our families spend every day living in fear for their child. Parents can become exhausted and emotionally drained from sleepless nights, constant worry and guilt towards not spending as much time with their other children, as well as enduring financial stresses and practical difficulties of caring for their child on a daily basis”, she said. “That’s why our short break care service is crucial. We help to temporarily alleviate the stresses by giving the whole family a much-needed holiday. They enjoy sessions together in the hydrotherapy pool, day trips to the beach and a good night’s sleep – things that sound so simple to us but for them are impossible in their day to day lives. By the end of their stay, parents are physically and emotionally in a much better place”. And Bridget added: “Just like any holiday, when the week is over it’s back to reality, but at least I have found some more strength, ready to go again. For my family and the many others that Tŷ Hafan supports, a Tŷ Hafan holiday means making memories and special moments that matter, and having time to properly switch off. It’s just the perfect family holiday.”

" We have been going on holiday to Tŷ Hafan and using their fantastic services since Elain was one"

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moments matter Children’s Hospice Week, the only week in the year dedicated to raising awareness and funds for the 49,000 children across the UK living with life-limiting conditions and the lifeline services that support them, ran from 21 to 27 May. This year, our aim was to show that children’s hospices are places where children and their families live life to the full, no matter how short it may be. Tŷ Hafan’s services provide comfort and care to around 250 life-limited children and their families every year to help ensure that a ‘short life is a full life'. The service we provide allows families the time and confidence to share precious moments and make the most of the time they have together. "Tŷ Hafan is a very different place to what you might imagine", said Tŷ Hafan Chief Executive, Rob Jones. "Of course we deal with serious and challenging conditions, but the hospice is also a joyous place, full of life, where our families experience a vital break from the realities and trials of caring for a life-limited child 24/7. Each service we provide is an

essential lifeline that has a specific purpose and helps raise the quality of life for children and their families. From personal experience, Tŷ Hafan made a fundamental difference for my family when we were fortunate enough to be referred six years ago. "Children’s Hospice Week is highlighting how we create moments that matter for our families and help them make memories together. Summer’s approaching, but while most families are packing their suitcases for their summer holiday, many families we support are packing theirs to come to Tŷ Hafan for vital short break care”, added Rob.

Children’s Hospice Week is organised by Together for Short Lives - the UK charity for children’s palliative care. www.togetherforshortlives.org.uk.

"Tŷ Hafan is a very different place to what you might imagine"

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every dad has his own mountain to climb Between 4-7 July, a group of intrepid Tŷ Hafan Dad's, supported by uncles, brothers and staff climbed five of the tallest mountains in the UK in under 55 hours! The group scaled Ben Nevis in Scotland, Scafell Pike in England, and Snowden, Cadair Idris and Penyfan in Wales to help raise money and awareness of Tŷ Hafan while spreading the message that dads matter. Climbing a combined height of 5,187m and covering over 36 miles in total, this challenge was about the dads pushing themselves, inspiring others, making friendships and proving once again that our dads are stronger together. More than just a group of men climbing mountains, it was about showing others that no matter what the odds, no matter what obstacles are in front of you, that you can accomplish anything. This is a group of dads who, regardless of their current situation, are walking the same journey in life and now want to walk together to inspire others and themselves. One of the #5in55 dads, Paul Fears, has been coming to Tŷ Hafan for many years with his son Greg and as official photographer of the challenge, he had the unenviable task of carrying the extra weight of his equipment up the five mountains. Paul said: “There was no doubt that taking on a challenge that combined the national and welsh3peaks challenge was going to be hard, but then all of us faced tougher

challenges every day. As dads and uncles of children with a life-limiting illness or having lost children, we have to overcome hurdles on a daily basis, of which many are emotional. “And that’s why we wanted to take on such a ridiculous challenge. Excuse the generalisation, but dads and men are not great at expressing their emotions. Maybe it is society or just genetics, but us men are supposed to be the strong ones, taking care of our families and protecting them against any harm. But when your child has a life-limiting illness, you can’t. That power of protection is snatched away. “However, there are things that we can do. Like pose naked for calendars and climb mountains. Being able to do something, whilst highlighting the difficulties dads face, and hopefully raising some money for the amazing Tŷ Hafan that helps us care for our families, actually helps.” “There is no denying that the challenge was tough, but I feel that I have made friends for life. 16 of us walked the mountains and I had a chance to walk alongside everyone at some stage. There were some difficult moments, where we had to help each other through the pain barrier, but there was never any doubt that we would do it.

“There are so many highlights. The boys sitting on a jetty and splashing their feet in Loch Lomond during a rest break on the way up. Eating sausages at 3:00am in the morning as we prepared to climb Cadair Idris. Standing together in a circle, with arms linked, on the top of Cadair Idris as we all held a minute silence to think about our families and all the other families that have been supported by Tŷ Hafan. I could easily list 50 more. “What we, as a group of 20, achieved was something special. Not just completing the #5in55 challenge but being there for each other.” The challenge was a huge success, both in raising awareness of the challenges dads’ face, awareness of Tŷ Hafan as a charity and in helping to raise much needed funds in order for Tŷ Hafan to continue to provide support to our families. Congratulations and thank you to everyone who was involved in this incredible challenge.

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"There is no denying that the challenge was tough, but I feel that I have made friends for life."

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our news and stories from t ŷ hafan 029 2053 2199 www.tyhafan.org

fundraising noticeboard Here is more of the fun and games that our amazing supporters have been getting up to since our last edition. Thank you so much to every one of our supporters who set the bar so high when taking on challenges to raise money for us. We can only feature a few, but every one changes lives.

piring with their Ensono have been ins , this year taking Team Extreme events ll of China, as Wa on the mighty Great fundraisers er oth of er well as a numb for a day. in their mission to pay

eir time e volunteered th Companies Hous ing Tŷ Hafan by help in Handcrafted by ted na do m gems fro to create up-cycled s. op sh r items to sell in ou

Gerry Stentiford, Julian Sarsby and Charlie Newington-Bridges ran 150 miles along the River Wye over six days, raising £32,000 split between Tŷ Hafan and the Wye and Usk Foundation.

14-year-o ld Ellie ha d her bea locks cut utifu o Neville Ha ff in aid of Tŷ Hafa l long ll Hospita n and l, with he donated r hair bein to the Prin g c ess Trust wigs for c who mak hildren w e ith cance r.

During a weeklong ch allenge, e-sports company Myztro Ga ming became our first ever #gameraise rs playing Quake Champions while str eaming on Twitch TV, a new and inclusive way to fundraise.

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As well as a having ‘Crafternoon ’ activity table at the wall2wall Jazz Festival, the Black Mountain Jazz Club pledged a contribution of £3 from every ticket sold for their Cha rity Swing Party to Tŷ Hafan.

For more Tŷ Hafan, For more fromfrom Tŷ Hafan, signsign up up to our e-newsletter, A Little Cwtch to our e-newsletter, A Little Cwtch

is always something happening at Tŷ Hafan that’spossible only possible here There is always something specialspecial happening at Tŷ Hafan that’s only the incredible support we receive from people like you. hanksthanks to the to incredible support we receive from people like you.

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Sing along under the stars with Tŷ Hafan this Christmas and help make a short life a full life.

christmas at the castle

For your tickets, please visit:

365 days of being there #beingthere365 #christmasatthecastle

tyhafan.org/christmas-at-the-castle

Friday 30 November 2018 6:00pm – 8:30pm (doors open at 5:30pm)

Cardiff Castle Adult £10 Child £5

Performances from...

Elsa, Anna and Belle