Tŷ Hafan Cwtch Magazine Spring 2019

cwtch

newsletter spring/summer 2019

our news and stories from tŷ hafan

remembering our past to shape our future inside Celebrating

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these names will be forever In our skies p.4

luca's story p.8

a dip in the ocean p.12

cwtch

welcome Welcome to the Spring/Summer edition of Cwtch.

our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

a brief

I’ve been a nurse at Tŷ Hafan since 2000 when the hospice was still very young and I’ve seen many incredible developments to paediatric palliative care in that time. As a newly qualified nurse, what immediately struck me was the homely atmosphere that set Tŷ Hafan apart from hospital. It was somewhere families could come, where they knew they’d be safe and supported, but it didn’t have the antiseptic and impersonal feel that a hospital ward can sometimes have.

It was tailor-made to suit the holistic needs of our families.

Over the years, the needs of our families have changed. With conditions becoming more complex and treatments more successful, the nature of our service has needed to keep up.

So while Tŷ Hafan’s original vision of “a Wales where all children who may die in childhood live a fulfilling family life” hasn’t changed, we have continually evolved to ensure that we remain at the forefront of children’s palliative care. Today we are more specialised, providing many diverse therapies, a community outreach programme that takes Tŷ Hafan all over Wales and the hospice itself is better catered towards inclusivity with our play park, multisensory room and hydrotherapy pool offering families services they can’t access anywhere else.

It now takes £4.4m every year to run our services compared to £1m in 1999

Something I’ve found to be incredibly important is the fact that we’ve managed to retain the one-to-one element of our care.

And while it can be demanding on staff, the benefits to the families are obvious and it is something not many hospices can provide.

Our focus will be to continue to provide our families with the highest possible standard of care and staying on top of these new changes and challenges by continually updating our skills and services.

I hope you enjoy this edition of Cwtch and that it gives you an idea of how vitally important your support has been to the charity as a whole. The next 20 years promise to be just as exciting and challenging as what has come before and we can’t wait to be on that journey with you.

Sophie Williams Transition Nurse

contents welcome ............................................................................................................02 these names will be forever In our skies ...................................................04 help our nurses be ready for the next generation .....................06 luca’s story..........................................................................................................08 dads’ mountainous efforts rewarded with just giving award..............10 top chefs cook up over £150k in aid of t ŷ hafan .....................................13 fundraising noticeboard .................................................................................14

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On 25 January 1999, the tireless fundraising and hard work of so many, meant that Suzanne Goodall’s vision of opening the first children’s hospice in Wales became reality when Tŷ Hafan opened its doors for the very first time.

Of course, opening the doors was merely the culmination of so much that came before, starting when Suzanne registered Tŷ Hafan with the Charity Commission in 1990. Those nine years saw a huge fundraising campaign led

by South Wales Echo in 1994, the same year that Princess Diana became Patron.

Luciano Pavarotti performed at a concert in Cardiff Castle to help raise money in 1995 and you, our unbelievable supporters, came together and helped raise more than £2.3m towards building and equipping the hospice.

And so, in our 20th year since Jacob Faraday and Emily Weaver were the first children to come through the doors,

spring/summer 2019

look back We’ve supported over 800 children and 770 families since we first opened

Tŷ Hafan has supported over 800 children and 770 families from all over Wales.

From expanding to a seven day a week service in 2005 to the introduction of our first community nurse in Powys this year, Tŷ Hafan has always been innovative.

In 2017, we appointed an on-site Consultant, taking us to the next level in providing clinical expertise in the hospice and community, not just the hospital.

Our hydrotherapy pool, state-of-the-art multisensory room and fully inclusive play park have all been essential upgrades to the hospice too.

Tŷ Hafan launched the first scout group for a hospice in Wales in 2008. The group has been instrumental in allowing children similar experiences to what they see their friends and peers enjoying, while being sympathetic to their unique needs and abilities.

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But these services are far more than just nice to have. They are essential to improving the quality of life of both the children and their families. Every child having a right to play isn’t just true because children should be allowed to be children, regardless of their physical and mental abilities, although that is definitely part of it. Play has serious benefits to the child’s wellbeing too. Social, spiritual and emotional development, as well as physical dexterity and coordination, are all learned through play.

So now the future is here and Tŷ Hafan will look to build on Suzanne’s legacy for the next 20 years and beyond. Tŷ Hafan will be there for the families of Wales who need us, and with your support, continue to remain at the forefront of children’s palliative care.

And it’s difficult to overestimate the importance of being able to share an activity with your child or sibling that you can’t do anywhere else. Enjoying a dip in the hydrotherapy pool with your child or playing on the trampoline with your wheelchair bound sibling. These are shared moments to remember that can’t happen just anywhere.

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our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

these names will be forever in our skies You may have already heard of our fantastic Birdsong project, one of the major additions to the memorial garden, with it recently featuring on BBC Radio 5 Live. The project is the brainchild of sound artist Justin Wiggan, who has taken the names of all of the children at Tŷ Hafan who have died during our 20 years, put them into a Morse code translator and sampled birdsong around them to create a unique and innovative form of remembrance for our families.

Abigail Harvey’s family has been instrumental in the success of the project and here Abigail’s mum, Pauline, tells us what Birdsong means to families like hers.

Not many people realise that the love and support Tŷ Hafan give their families doesn’t stop when the life-limited child dies. There are a number of initiatives for bereaved families and you continue to be welcomed at all Tŷ Hafan family events. There is a Memorial Garden within the grounds of Tŷ Hafan which has recently undergone extensive refurbishment. On Saturday 26 January 2019, I attended the launch of the “These Names Will Be Forever In Our Skies” project, or “Birdsong” project as it’s come to be known as, the latest addition to the Memorial Garden.

The project was born out of a conversation between Sound Artist Justin Wiggan and Tŷ Hafan’s own Head of Community Services and Partnerships Tracy Jones. It aims to remember and celebrate the lives of the Tŷ Hafan children who have passed, through the medium of birdsong. Each child’s name has been translated using Morse code, into the song of the bird which sings the loudest in the month the child passed, and is followed by a silence of one second for each year of the child’s life. The piece currently runs at over two and a half hours and will continue to grow as future children pass. The hope is that, as the piece plays in the memorial garden, the local birds will start to mimic the names and begin to sing them to other birds, so that the names pass from bird to bird throughout the skies.

Lots of families came along to the emotionally charged project launch. I had been involved with the project as it developed and was lucky enough to already have a copy of “my” individual birdsong, a nineteen second piece of a robin singing my

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daughter’s name, Abigail. I have the song on my phone and take it everywhere with me. But this would be the first time I would hear the whole finished piece.

I stood in the Memorial Garden gazebo listening as the individual birdsongs came from different areas of the garden. Sometimes one bird seemed to follow on almost immediately from the one before, sometimes the gaps were so long it came as a surprise when the next one began. All the songs were very different from each other, unique and beautiful. And a surprising thing happened, it felt as though the emotional downpour lifted and the sun came out from behind the clouds (the actual real rain continued unabated, the weather was horrific and clearly had no sense of occasion).

I felt overwhelming warmth and comfort.

I was no longer waiting to hear Abigail’s name, that didn’t seem to matter anymore, she was part of the chorus, she was part of every birdsong, the silences celebrated each individual short life, but it felt like all the children were together in the song of each bird. Abigail is not alone, she is with friends and they are joyfully singing.

I’m sure each person who experiences “These Names Will Be Forever In Our Skies” will feel something different. The experience will be unique to them. It’s a beautiful, inspired, humbling, breathtaking addition to the memorial garden, for which I personally feel hugely grateful to Tŷ Hafan, Justin and Tracy for.

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"I was no longer waiting to hear Abigail’s name, that didn’t seem to matter anymore, she was part of the chorus, she was part of every birdsong"

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our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

spring/summer 2019

help our nurses be ready for the next generation Last year we told you how our nurses bring the medicine and the magic to Tŷ Hafan children, how our one-to-one care differentiates us from nurses you’d meet on a ward. They are wonderfully skilled nurses and clinical care is always at the forefront of what they do, but they bring a little something different too, that Tŷ Hafan sparkle that lets families make the most of the time they have together.

This spring we will be focusing on our nurses again because Tŷ Hafan simply wouldn’t be Tŷ Hafan without them.

The one-to-one aspect means that our nurses can form a fast bond with the families, which gives parents the confidence to relinquish some of their responsibilities so that they can focus on family rather than care. It can often be difficult to take that step back because nobody knows a child like the parent, but a break from everyday duties is incredibly important and allows them to recharge and recuperate.

Sadly, as far reaching as Tŷ Hafan’s service already is, we know that we aren’t reaching everyone in Wales that may need us, something we are working hard to change. One of the ways we are doing this is taking Tŷ Hafan out into the community.

We are incredibly proud to have introduced our first ever community children’s nurse, who will specialise in supporting children with life-limiting illnesses and their families across Powys.

Working in partnership with Powys Teaching Health Board (PTHB), and based with the children’s community nursing team, Sara Jones took up her post in December 2018, and for the next two years, will be helping life-limited children achieve the best quality of life in a setting of their own or their family’s choosing.

Part of Sara’s palliative role will be offering support to parents or carers for grief and loss when their child is nearing the end of their life and after their death. She’ll also be identifying children across the county who would benefit from a palliative care service.

There are other community nurse projects in the pipeline too, with Swansea being the next area to benefit from a community children’s nurse sometime in 2019.

If you’d like to support our nurses to ensure that they are ready for the next generation of T ŷ Hafan children, please visit www.tyhafan.org/nurses.

Our community nurse will provide our families with another option for their care giving them choice

Sara’s role - the first of its kind in Wales - will include visiting children in their own homes and helping them with their physical needs, pain management and symptom control, but also supporting their families with their emotional, social and other needs. Sara will also be using her own deep understanding and long experience of palliative care to provide families and professionals caring for life-limited children in Powys with a point of contact where they can go for help and advice.

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our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

luca’s story Luca Pucella was a happy, energetic little boy with an infectious laugh, a wicked sense of humour and a tremendous zest for life. He brought love and joy to the lives of his family, his friends and everyone who knew him. But something made Luca different to other boys. He suffered from a rare, life-limiting condition, and in November 2017, when he was just eleven years old, Luca died.

ROHHAD syndrome causes rapid-onset obesity, impairment of the autonomic nervous system and reduced lung function. Luca was the only person in Wales to suffer from the incurable condition, affecting around 75 people worldwide.

Angelo, Luca’s dad, said: “When Luca was first diagnosed at two and a half years old, we felt very much on our own. ROHHAD meant Luca had a host of health problems including repeated respiratory and cardiac arrests, which left him in intensive care.

He also had to use a ventilator at night to support his breathing and had a one-to-one nurse to monitor him during the night.

Luca’s diagnosis meant the family faced a difficult and uncertain future so they felt a huge sense of relief when they were referred to Tŷ Hafan in 2010.

Luca spent the remaining years of his short life in and out of hospital, and Tŷ Hafan helped Angelo and the rest of the family give him as normal a life as possible, not letting his illness define him.

“Tŷ Hafan was one of the support networks that became our extended family, being there on the other end of the phone, visiting us when Luca was in hospital and providing the vital short break care that we so much needed. Not long before he lost his battle with his disease, Luca climbed to the top of Pen y Fan with the help of Tŷ Hafan and the Royal Welsh Fusiliers.

It was a tremendous achievement for him and a moment to treasure forever”, said Angelo.

Part of Tŷ Hafan’s unique service is to provide support to the entire family. Luca’s little sister Sofia, now nine, loved to visit the hospice along with her brother, taking part in activity and adventure days, trips out and play therapy. She, Angelo and Beth remain part of Tŷ Hafan’s support groups, which allow mums, dads and siblings to meet families in situations similar to their own.

Angelo said: “We’re all on a similar journey and meeting with people who are going through situations like yours and can sympathise with you and support you is a great comfort. And on our journey, Tŷ Hafan is there at our ‘pitstops’, recharging us and encouraging us to go on when we stumble and fall”.

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Angelo added: “Luca always went out of his way to help others.

To honour his spirit of generosity we chose to donate Luca’s organs. His parting gift was to give the amazing gift of life to three people, with the potential to save more lives, pending further tests”.

Remembering his son, Angelo added: “Luca always lived life as it should be lived – he seized each opportunity that life presented with both hands and squeezed every drop out of it. He wanted to meet everyone and experience everything. Luca made the impossible possible - he survived against all odds for as long as he did and achieved so much”.

Angelo said: “Having experienced first-hand the support that Tŷ Hafan provides to us and other families, we cannot thank them enough, for providing care and being there! Thank you Tŷ Hafan!”

spring/summer 2019

"Luca always went out of his way to help others. To honour his spirit of generosity we chose to donate Luca’s organs.

His parting gift was to give the amazing gift of life to three people, with the potential to save more lives, pending further tests"

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our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

dads’ mountainous efforts rewarded with justgiving award A definite highlight of last year was the incredible challenge that the Tŷ Hafan dads’ group embarked on in July, scaling the mighty Ben Nevis in Scotland, then Scarfell Pike in England, followed by Snowdon, Cadair Idris and Pen y Fan in Wales in 55 hours.

Their fundraising efforts didn’t go unnoticed either as they were awarded with the prestigious JustGiving ‘Best Fundraising Team’ Award at the annual JustGiving Awards in London’s The Brewery.

The 16-strong team, which included uncles and grandfathers as well as dads, set off at the beginning of July and scaled these five UK mountains in under 55 hours which included travelling time between the five peaks.

Their challenge saw them climbing a combined height of 5,187 metres and raising a staggering £30,000 for Tŷ Hafan as their way of saying thank you to the hospice that has been very much a part of the men’s life journey.

The team received their ‘Best Fundraising Team’ award from fitness guru, Shaun Stafford.

Coordinator of Tŷ Hafans Dads’ Group, Gareth Jenkins, said: “Many thanks to JustGiving for recognising our dads’ tireless commitment to this challenge, which was amazing and an inspiration to many people.

“The support shown between the dads was nothing short of incredible. The friendships that developed during this challenge will last a lifetime.”

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“It was not only responsive to their needs, it empowered them to give something back, sharing experiences good and bad along with combating the isolation they face due to the complexities of parenting a sick child.”

Dad Paul Fears, whose son Greg and family were supported

by Tŷ Hafan when Greg was a child, said: “Every Tŷ Hafan dad has his own mountain to climb when caring for a child with a life-limiting condition but we are climbing mountains to support and inspire others.”

Well done to each and every one of the group for their amazing achievement.

spring/summer 2019

being there 365 Thank you so much to every one of you who donated to our #BeingThere365 Christmas Appeal. We had a brilliant response and thanks to your generosity, we raised an amazing £35,934.75!

For many families of children with life-limited conditions, Christmas is just another day. Tŷ Hafan gives these families the opportunity to celebrate in a stress-free environment and make some magical memories to hold on to.

Our doors remain open 365 days a year and the staff continue to provide critical care along with some festive magic during the holiday season! By being there all year round and thanks to your support, Tŷ Hafan can bring some smiles to the children at Christmas.

Support comes in so many different ways and Tŷ Hafan couldn’t manage without it. From donations to our shops, volunteers at our events, charity ambassadors and, of course, all the fantastic fundraising that goes on, it is because of you that Tŷ Hafan is what it is.

’twas the season Christmas at the Castle kicked off the festive period in typical Tŷ Hafan style under the magnificent backdrop of Cardiff Castle. The grounds of the historic landmark were filled with seasonal song and a festive market, before an awe-inspiring fireworks display brought the event to a dramatic close.

Our infamous Christmas Pantomimes continued on every Monday and Friday during December and were so much fun for the families and guest in attendance and the performers themselves.

The Wizard of Oz was the inspiration behind the performances and it’s always amazing to see everyone embrace the madness.

Hopefully you managed to catch one of the performances on our Facebook Live stream.

Christmas wouldn’t be Christmas without the plethora of wonderful guests to the hospice over the month. What are the first things we think about when we think Christmas? Mince pies, Home Alone and a visit from the Cardiff Devils, so we loved seeing them drop by. The Cardiff Blues also spread festive cheer on their visit and we can’t wait to have them back.

Of course, Santa is always the highlight and to see him arrive on Christmas Eve in the Welsh Air Ambulance is a sight to behold.

The smiles on the children’s faces could only be brought by him.

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our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

a dip in the ocean new year’s day dip

Barry Island Beach was the place to be the morning after the night before for Tŷ Hafan’s first ever New Year’s Day Dip. The event is a mainstay of the New Year’s calendar, but long time organiser Rob Salter decided to gift it to Tŷ Hafan having been in charge for 35 years.

So on 1 January, 2,000 participants braved the tropical waves, breaking all previous records by 200%, and there were another 5,000 spectators who came along to cheer them on and enjoy life on the beach. The whole event was fantastic, with support from the RNLI and Whitmore Bay Surf Life Saving Club. Thank you to everyone who made it such a special event and, especially, Rob for allowing Tŷ Hafan to take over this wonderful event.

pedal to paris Despite appalling weather conditions, including ice, snow and arctic temperatures, 50 Tŷ Hafan supercyclists managed to complete an incredible four day cycle ride that started in Cardiff on 29 January and finished in Paris on 1 February.

Three Welsh celebrities – former Welsh international rugby players Rupert Moon and Philippa Tuttiett, and opera singer and TV personality Wynne Evans – joined a 50 strong peloton of riders in Tŷ Hafan’s first ever Ride to the Rugby event.

The 320 mile ride was organised by seasoned cyclists Richard Smith and Andrew Jones, who developed the Ride to the Rugby concept several years ago.

The intrepid group left Cardiff’s Principality Stadium early in the morning of 29 January and arrived at Paris’s Stade de France four days later, in time to see Wales kick off against France in the first game of the 2019 Rugby Six Nations.

The riders - who were all of differing cycling abilities and experience – had plenty of encouragement for overcoming the particularly tough conditions on the road. Health and safety meant the cyclists had to travel briefly by team bus for a short while in Northern France, but it was their own determination and pure pedal power that that got them through the demanding challenge, all in the name of Tŷ Hafan.

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“It was an epic challenge but we were happy to give it our best shot”, said Rupert Moon, who is celebrating his 50th birthday year by doing 50 remarkable things. “I’ve seen for myself what a fantastic and deserving charity Tŷ Hafan is and getting a bit saddle sore and taking a few falls was nothing in comparison to what Tŷ Hafan families have to face every single day”.

And, as if riding 320 miles wasn’t enough, the cyclists still had the energy to take their seats in the Stade de France, cheer Wales on and see the Welsh emerge victorious against Les Bleus. Heroes on and off the pitch!

Look out Dublin for when T ŷ Hafan comes to visit in 2020!

spring/summer 2019

top chefs cook up over £150k in aid of t ŷ hafan Top chefs from across the UK took over the kitchens of voco St David’s in Cardiff Bay on 26 January to raise over £150,000 for children with life-limited conditions and their families.

Held every two years, Chefs’ Night Out brings together a number of the country’s finest chefs to cook a four-course menu per table with matched wines for 160 guests. Guests discovered which chef would be cooking their dinner at a special draw during the Taittinger reception. Chefs designed their menus exclusively for the night using local produce, matched with premium wines to accompany each course.

The impressive line-up of 16 chefs not only delivered their time and tasty delights free of charge but also offered their culinary services in an after-dinner auction. Generous diners bid for their favourite chef – with the prize being a dinner party for ten at their own home cooked by the chef at a later date. Bids for individual chefs went for up to £20,000.

Tŷ Hafan is very close to the hearts of organisers David Loosemore and Huw Edwards, who started Chefs’ Night Out back in 2010.

The total raised to date from the Chefs’ Night Out series is nearly £800,000.

David Loosemore said: “Raising the record amount this year of over £150,000 for such a worthwhile cause as Tˆy Hafan is both an inspiring and humbling experience.

“We are so grateful to the generosity of our guests, our chefs and all the helpers involved. The Chefs’ Night Out family continues to grow and we hope to host many more dinners in the future”.

Huw Edwards added: “We couldn’t raise this amount of money without the generosity of the chefs, restaurants and their suppliers in giving not only their time but also all of their produce and wine for free. It really does make the whole event succeed”.

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o u r n e w s a n d s t o r i e s f r o m t ŷ h a f a n

029 2053 2199

www.tyhafan.org

fundraising noticeboard Our fantastic supporters have been up to some amazing things to raise money for Tŷ Hafan since our last edition. How people chose to support us never ceases to amaze us. No matter what you raise, every penny means so much to Tŷ Hafan families.

Thank you to each and every one of you.

sed £2,000 Brawd Misfit Group rai s Christmas up gro through the fitness . They even Party Auction and Raffle e or two on managed to convince to get s r e b m e Tŷ Hafan staff m n! sio ses a in ed involv

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Acorns Nurseries Limited have been growing a new generation of fundraisers since their fantastic support of Snowdogs: Tails in Wales. The perfect fit between provider of childcare and children’s hospice has led them to paying for a day of care.

Iris becam fundraise e one of our youn gest rs when s he and h chose to er family donate £ 250 to Tŷ celebratio Haf n of her fi rst birthda an in you so m y. uch Iris, C hantel an Thank d Carl for such a kin d gift.

Donna Baddeley too k on the searing heat of the Sahara Desert with eight other women from Valleys To Coast Housing Ltd. As Valleys To Co ast Housing chosen charity of the year, T ŷ Hafan benefitted from their fundraisin g efforts.

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HeatSource Wales has been a fantastic supporter of Tŷ H afan as well as offering Tŷ Hafan staff a nd visitors a 20% discount on their boiler installations. It’s this kind of sup port that keeps us feeling warm insid e!

ices ead Building Serv Newport’s Whiteh fan’s a H ŷ T r 00 to pay fo raised over £12,0 golf l sfu es cc su rough a Christmas Day, th n Ia d Rhys Morton an day and a cycle. eir th ng ivi ctured rece Cummings are pi our gift tree. on e pl ap

For more from Ty Tyŷˆ Hafan, sign up to our e-newsletter, r A Little Cwtch r,

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

If you’d like to hear the stories we couldn’t fit in Cwtch each month, sign up to A Little Cwtch, our e-newsletter, by visiting www.tyhafan.org/stay-in-touch or by filling in your details below and ticking the box, then return this form using our freepost address: Freepost RTBS-YCZU-JZSJ, Fundraising, Tŷ Hafan, Hayes Road, Sully CF64 5XX. Your details will be kept safe and secure and will only be used by us. You can change your mind at any time by calling 029 2053 2255 or emailing supporterservices@tyhafan.org. title

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Please let us know if you’d like to receive our monthly e-newsletter called A Little Cwtch: I’d like to receive a Little Cwtch by email email email address We value your support and respect your privacy. We will never sell or share your details and promise to keep them safe. For further details on how your data is used and stored, visit www.tyhafan.org.uk/data-protection.

Tŷ Hafan - the hospice for children in Wales. Hayes Road, Sully, CF64 5XX Registered Charity No: 1047912. Tŷ Hafan® is a registered trade mark.

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t ŷ hafan

events 27 Apr

2019

Character Chase

5 May

ABP Newport Wales Marathon and 10k*

15 Jun

GE Aviation Wales welsh3peaks challenge

inal wel rig

t.

21

years

3peaks sh

Virgin Money London Marathon*

es

28 Apr

the o

Singleton Park, Swansea

1998

23 Jun

JCP Swansea Half Marathon*

7 Jul

Healthspan Porthcawl 10k*

3 Aug

Family Fun Day Tŷ Hafan, Hayes Road, Sully

4 Aug

Barry Island 10k*

19 Sept 22 Sept

Disneyland® Paris Run Weekend

29 Sept

Bike and Hike

Kids races, 5k, 10k and half marathon

Brecon

6 Oct

Cardiff Half Marathon*

18 Oct

T yˆ Hafan Ball

* Make Tŷ Hafan your chosen charity at these events

The Exchange Hotel, Cardiff

Dec

Christmas at the Castle Cardiff Castle

1 Jan 2020

New Year’s Day Dip Barry Island

Feb 2020 16

Ride to the Rugby Dublin

For more infomation on events, please visit

www.tyhafan.org/events or email events@tyhafan.org Become an event volunteer, sign up today at

volunteering.tyhafan.org www.tyhafan.org

Reg. Charity No: 1047912