Spring/Summer 2022 Celebrating
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The latest news and stories from Työ Hafan
making every moment count
what’s inside stories from the handprint walls
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esmai’s story
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a spotlight on the unsung heroes
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cwtch
contents welcome
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stories from the handprint walls
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seth set to make his mark
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extra governmental funding
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esmai’s story
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a new look hospice
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spotlight on unsung heroes
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midwinter festival of light
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fundraising support
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a dragon called môr
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t ŷ hafan in numbers
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where the birds sing our names
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get in touch There’s a number of ways to keep in touch with us at T ŷ Hafan: www.tyhafan.org supportercare@tyhafan.org 029 2053 2199
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Spring/Summer 2022
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welcome from maria As we look forward to the brighter days of summer, I am delighted to invite you to enjoy the latest copy of ‘Cwtch’. I hope you will be inspired, as I am, by the photos and stories of some of the most heroic people I know, the children, young people and their amazing families supported by our charity. For Tŷ Hafan, as for many of you, it feels like we are emerging from a long period of hibernation. That said, it has been an exceptionally busy time for all of us. While our amazing care teams continued to deliver their tender, specialist care in PPE, 24/7, our community teams were out there in children’s homes, schools, in hospital, wherever they were needed. Despite ongoing restrictions, retail colleagues worked hard to keep our shops going; lottery, fundraising, philanthropy and supporter care colleagues continued to engage with our supporter and donors to raise much needed funds to enable us to support some of the most special children and families in Wales through some of the most difficult times in their lives. I must not forget my colleagues ‘behind the scenes’. Running a business to be a charity, providing free palliative care and support to those who need it, continues to be a real challenge in the current climate, but we are inspired every day by these children and families, and by you, our loyal supporters.
our new look magazine!
There have been some positive highlights. In the darkest days of Winter, the Welsh Government responded to our joint campaign (supported by many of you) with Tŷ Gobaith, the children’s hospice in North Wales, for a ‘Lifeline Fund’, initially increasing our statutory funding for the cost of care from 5% to 21%, on a par with England. Although there is more to do to achieve funding of 50% (as children’s hospices do in Scotland), this is a real step forward, particularly while costs are escalating at an unprecedented rate across the entire charity. Both charities were also delighted to be selected by Principality Building Society colleagues as their Charity of the Year – enabling us to raise funds, and vitally, awareness of our services, across Wales. We also completed the beautiful refurbishment of our hospice and sensory gardens, which hopefully you will get to see one day soon.
As always, we couldn’t do what we do without you. Thank You!
cwtch has had a makeover, but it still contains the inspirational stories from young people and their families, through to the latest fundraising news. We have introduced QR codes, so you can scan the code quickly on your mobile device to read more about the article itself and similar features.
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our news and stories from t ŷ hafan
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stories from the… handprint walls When asked what the first thing that comes to mind when you think of Tŷ Hafan is, answers are likely to be really varied. But what has always hit visitors to the hospice is how bursting with colour it is, from its unique atmosphere to the characters you meet and, of course, the vibrant handprint walls. Walking into the heart of the hospice, you are greeted by hand and footprints of all shapes, sizes and colours. The walls have been decorated with these snapshots of a time and place for as long as our doors have been open. They are a huge part of the hospice and so important to those who have left their mark. Memory making is a large part of what we do at Tŷ Hafan and something tangible like the handprints help to make the connection to the happy times spent together last. From Tŷ Hafan children and their families to our patron, HRH The Prince of Wales, these walls illustrate a large part of the Tŷ Hafan story, providing the backdrop for the hand and footprints of those children who pass through our lives all too quickly but leave such an indelible impression. Tŷ Hafan will mean different things to different people, but remembrance is undoubtedly one of our most important elements. To be able to revisit the walls and see these impressions from a different time means so much to families, knowing that there is a place where their precious child will never be forgotten.
They are the hand and footprints of those children who pass through our lives all too quickly but leave such an indelible impression.
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After more than 20 years of constant use, the walls have had their fair share of dinks and chips. So, to keep it fresh and provide more space to allow us to continue this tradition, as part of the hospice refurbishment, we’ve looked for new ways to preserve the prints. Every print on every wall has been painstakingly digitised, highlighting the faded ones and grouping families, they have then been reproduced onto Perspex and placed in front of the originals so they are protected behind the new walls. It’s a way of ensuring the longevity of the prints and retaining the originals, while staying in keeping with the refurbishment work that is so essential to the way we provide expert care to our families. Families can now see how the new look walls turned out and are able to start adding to them. There are lots of things about our newly refurbished hospice to be excited about, but it really does all start with our famous handprint walls.
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nurse from super sib to super Meg Fears, 23, has recently joined our Care Team as one Tŷ Hafan’s specialist palliative care nurses. We caught up with Meg and asked her to share her experiences to help us to mark International Nurses Day. “I joined the care team at Tŷ Hafan as a paediatric palliative care nurse recently,” says Meg, “but I have been coming to Tŷ Hafan since I was eight. “My brother Greg has Downs Syndrome as well as pulmonary hypertension and cardiac disease. He started to come to Tŷ Hafan when he was 15, and my other brother Tom and I also became involved then too.
“Greg has traits of autism so it’s really important that he has, wherever possible, the same people looking after him. And he gets that here at Tŷ Hafan. The atmosphere here is always so lovely. “Even when Greg left Tŷ Hafan because he had outgrown the support it offers, I still had lot of support through the Tŷ Hafan Super Sibs group. “Now, 15 years after I first came here as a child, I am a nurse working at Tŷ Hafan. It’s nice but it still feels a bit surreal. I wake up and then I think ‘Oh yeah, I’m going to work at Tŷ Hafan!’ It’s just so amazing!”
“I loved it right from the start. There’s always been such a lovely team here and when I was younger I would ‘help’ the nurses – basically I would copy whatever the nurses were doing. “Along with my parents and my other brother Tom, I have done a lot of caring for Greg. So it felt like a natural choice for me to go on and study paediatric nursing at Swansea University. I then worked at Noah’s Ark Children’s Hospital for a while, which was amazing. “But I decided to come into palliative care nursing at Tŷ Hafan because I think it’s just so special. It’s so much more than what people may think.
“15 years after I first came here, I am now a nurse at Tŷ Hafan.”
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seth set to make his mark on the welsh youth parliament
Teenager Seth Burke recently made history by becoming Tŷ Hafan’s first ever Welsh Youth Parliament (WYP) member. He is also the first ever member with a life-long, progressive condition of the UK’s first parliament ran for, and by, young people in Wales aged between 11-18. “My name is Seth Burke, I’m 13 years old, and I’m your Welsh Youth Parliament Member for the South Wales Central Region, based in Dinas Powys. I’m proud to be partnered with Tŷ Hafan Children’s Hospice, who have been helping me and my family for the last five or so years. “I think I’m the first in the Senedd [with a progressive, life-long condition] and I want to set an example to other children in Wales to follow their dreams. I think that sometimes because it’s been difficult for me, I want to make it easier for everyone. “I’m so proud to be a Welsh Youth Parliament Member – and even prouder to be the first Welsh Youth Parliament Member who is in a wheelchair and has Duchenne Muscular Dystrophy (DMD). I want to be a strong voice for other children like me, for other children who use wheelchairs and for children’s hospices, and those families and friends who go above and beyond to make sure that nothing is unachievable.” Seth added: “After my three years in office, I hope to have helped to create a Wales that is more compassionate to children like myself, and to ensure that Wales’ children’s hospices get all the support they can so they can help even more young people, and I hope to gain the life experience and skills to go on to do whatever it is I want to do.”
Seth has set himself five priority areas that he plans to tackle while in his position on the WYP. 1. Protecting our environment 4. Addressing mental health in and the natural world
2. Improved accessibility to
public spaces for people with disabilities
3. Tackling online bullying
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children and young people
5. Increase access to free
clubs that promote physical activity in children and young people
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extra governmental funding “a lifeline” A major focus for Tŷ Hafan over the last few years has been to build more resilience into our services in the hospice and in the community. With less than 10%, and often as low as 4%, of our funding coming from the government, Tŷ Hafan has relied almost entirely on the good will of our supporters to fund our essential services. In England, the equivalent funding is 21%, in Northern Ireland 25% and in Scotland 50%. Following calls for a “Lifeline Fund” for Wales’ children’s hospices in the wake of the recent Family Voices Report, the Minister for Health and Social Services, Eluned Morgan MS, made a statement on the findings of the first phase of the Welsh Government and Endof-Life Care Board’s hospice funding review. The announcement outlined an additional yearly allocation of £888,000 in government funding, shared between the two hospices. This funding will enable Tŷ Hafan and Tŷ Gobaith, the children’s hospice in north Wales, to extend the breadth and depth of their services and to provide more respite care for those families who so desperately need it. Ultimately, the announcement will help to reduce the burden of unplanned and crisis admissions on the NHS. Now, more than ever, the families of children with life-limiting conditions need this additional support. Families have told us that Tŷ Hafan and Tŷ Gobaith are often the only place where they receive essential care and support. This new funding will further our ambition to create a more compassionate Wales, one that values the importance of caring for a child towards the end of their unfairly short life and supports their family through the most difficult of times.
Scan for more information on the lifeline fund
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esmai’s story In every issue of Cwtch, we take the opportunity to highlight at least one family story to show readers the real-world impact their support has on the lives of those who need us. No two families experience the same journey with Tŷ Hafan. Part of the challenge and, undoubtedly, part of the joy of the job, is working closely with each family to determine how we can best support them. That could be allowing the child to express their feelings through music, giving siblings an outlet to be themselves, or helping parents to cope, all while providing expert medical care where it is needed. Four-year-old Esmai from Barry was diagnosed with CHARGE Syndrome shortly after she was born. She and her mum, Sami, were referred to Tŷ Hafan in 2017 when Esmai was just nine months old and they have been using our services ever since. “CHARGE Syndrome means that Esmai is partly blind and partly deaf. She also has to be fed through a tube, she has no balance, regular seizures, sleeping issues and behavioural issues,” says Sami. “She’s doing really well at the moment, but it’s full on looking after her. I don’t get a lot of sleep. This has left me with depression and anxiety. “Tŷ Hafan is the only respite that Esmai and I get. For the first couple of years, when we got to stay there for a couple of days – twice a year - I stayed with her in the hospice.
“Looking after Esmai is a 24/7 job so when she goes to T ŷ Hafan for respite care, it enables me to do the simplest little things, like have a bath, and sleep. Things that most other people totally take for granted. “Without Tŷ Hafan I would struggle big time as right now, it’s the only respite I get. My mum used to help me with her quite a lot, but we’ve not been able to see her properly for a year now due to the pandemic. “Esmai is constantly asking if she can go to Tŷ Hafan now. She loves her room there. When I drop her off, she gives me a little wave and says, “bye mum” and then off she goes. It’s so good for both of us, for our mental and physical health. “Tŷ Hafan is the only help outside my family that I have ever been offered. When I stayed there with Esmai, it was brilliant. I had lovely food cooked for me and a comfortable bed. It was like being in a hotel except there I could actually get some sleep.”
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“Then, when Covid hit, we were told we’d only get one visit a year, although lately, because we live in Barry and are close to the hospice, Esmai has been able to go in for a couple more breaks as they have called us at very short notice when they have had a bed free.
“Tŷ Hafan is the only respite that me and Esmai get”
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e w t a h w ow n k t ’ n o d “I .” t i t u o h t i w would do
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a new look hospice It’s been amazing to watch how the hospice refurbishment has been unfolding and we love the beach theme details that help to make it such a vibrant place – the perfect complement to the views out over the Bristol Channel. Here’s a selection of images from inside the hospice.
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a spotlight on the unsung heroes The medical needs of every child that uses Tŷ Hafan are incredibly complex, with some conditions virtually unique to that child. So when it comes to providing our holistic support to these children, it takes a team of highly trained professionals to meet their needs. You’ve met our nurses in these pages before and we love to share videos and photos of the specialists in the community team on our social media. But who are the unsung heroes who make sure the children always have someone there for them, who provide support to the nurses and love to get just as messy during messy play as the children? Karen is a healthcare support worker at T ŷ Hafan and this is what she loves about her work. I have been working at Tŷ Hafan for just over three years as a healthcare support worker (HCSW), working alongside nurses and other professionals to offer short break care, crisis care and end-of-life care to children and their families. It’s a very special place to work. I feel very fortunate to enjoy my job and feel privileged to be able to work with such amazing children, and spending time with them and their families - it’s not everyone that can say they came into work and dressed as a Tellytubby for a shift! Our days / nights can vary between having lots of fun – a water fight with a child and their sibling in the playground, celebrating Christmas in the summer to enable families to make precious memories or simply reading a favourite story to a child in bed who needs comforting. Knowing parents and families trust you with their child enough to be able to leave them in your care is huge, massive!! Hopefully, they can take time to catch up on some time for themselves and any other children they have, recharge. Sometimes just being able to sleep through a night is what they need the most.
one standout memor y We were caring for an inspirational young lady whose dream was to go to a music festival. Unfortunately, due to the nature of her illness and diagnosis it was not possible to arrange. Her mother, another inspirational lady, organised a festival in her name and I was very lucky and privileged to be able to take her, along with a fabulous nurse, Kaite (pictured with me opposite), to attend attend the festival. The welcome we had and the whole day was one I will never forget. I will always be grateful to have been a small part of the day. Sadly, the young lady passed away shortly after, but her mother is hoping to continue with them as an annual event to raise awareness around her daughter’s condition and funds for various charities including Tŷ Hafan.
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a midwinter festival of lights The magic of Christmas was on full display when we invited families to the hospice grounds for our second Festival of Lights. Tŷ Hafan staff spent many happy (and chilly!) hours transforming our beautiful grounds into an illuminated wonderland with an amazing array of light features and Christmas activities. We also made the most of an enormous marquee, donated by the incredibly generous Rob Pearce from TAD Ltd and Lewis Smith from LT Scaffold Services Ltd, and our lovely new sensory garden area courtesy of Greenfingers. Lots of extra light features were provided and the display was made even more fantastic by a donation from Figure of Eight Events.
Families were invited to come along to wander through the beautifully lit grounds, join in a selection of Christmas activities en route and finish with some Christmas cheer. As an outdoor event, and with careful consideration of how to keep our families and each other as safe as possible, we are really proud of how much this event has touched the hearts of the families we work with.
“It was a wonderful walk, full of Christmas spirit and beautiful lights! Smiles all around” Ruby Nash, Tŷ Hafan parent
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we’ve missed you… …so, it was an absolute delight to welcome the return of our in-person events with Christmas at the Cathedral, in time to usher in the festive period. We were joined by TV presenter, Lucy Owen, who hosted the evening, and were treated to wonderful performances by Cardiff Metropolitan Cathedral Choir and Treorchy Male Voice Choir. The undoubted star of the evening was Seth, who had just become the first person to use a wheelchair to be sworn into the Senedd as one of 60 young people elected to the Welsh Youth Parliament (you can read more about Seth on page 6). Seth read “Christmas Wish for You” by Kristen M Saccardi in front of the 230 strong audience (not including the choir members), who also heard a poem, “Megan’s First Snow” read by Professor Tony Curtis. The poem comes from Professor Curtis’ anthology book: Where the Birds Sing Our Names: An Anthology for T ŷ Hafan, which is available to buy with all proceeds going to Tŷ Hafan.
admirable admiral Tŷ Hafan was one of nine charities to receive a Christmas gift from Welsh financial services company Admiral, who have commitment to support communities and charities impacted by the pandemic. Admiral’s incredible donation of £38,000 to Tŷ Hafan just before Christmas comes as a result of staff choosing us to be one of the recipients of their Covid-19 Support Fund. Here’s what Nicki Burns, Executive Assistant at Admiral, said about Tŷ Hafan: ‘’We love what you do. Our staff have nominated you. You service the geographical areas where many of our staff live, and our families have used your services. You do incredible work to support children and their families as well as the support you give for volunteers. This aligns perfectly to our purpose.’’ Admiral staff have supported Tŷ Hafan in numerous ways over the years, donating over £250k to the charity.
If you and your company would like to support Tŷ Hafan - visit our website or scan the QR code
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Purchase “Where the Birds Sing Our Names” here or visit our website for details
a silver leaf for blair Blair Lundie – who has been supporting Tŷ Hafan since before our doors opened in 1999 – is never short of a way to help the charity. In the build up to Christmas, he turned his talented hand to woodcrafting and painting to create a range of very popular festive goods. All his materials are sourced locally. He carves and sands the wood, paints pieces with festive scenes with his sister Liz, then spends his free time selling what they’ve made at school fairs and Christmas markets in the valleys. He even uses the face-to-face with customers to tell them about Tŷ Hafan. Blair says he decided to start making and selling crafts as an alternative way to support us after hanging up his running shoes a couple of years ago. Blair has supported Tŷ Hafan in many different ways over the past 25 years, taking part in runs, including the London Marathon, and walks, even taking on our trek to the Great Wall of China back in 2017. Over the years Blair has raised tens of thousands of pounds for us and we were delighted to present him with a silver leaf on our special gift tree in recognition of his fundraising and the support he has given us.
Keep an eye out for some Easter crafts any day now! See how you can raise money for us
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jilly, t ŷ hafan and a dragon called môr Jilly Bebbington describes herself as coming from a long line of storytellers and for almost Tŷ Hafan entire existence, she has been an enthusiastic volunteer with our care team, loving nothing more than “telling the children stories, daft ones, anything to give the kids a bit of a kick!” One day, these tales took root into what became ‘A Dragon Called Môr’, Jilly’s first book, that told the adventures of a lonely little sea dragon who finds himself winded and washed up on the banks of the Bristol Channel. The book is a collection of six stories about Môr, aimed at six- to 11-yearolds, and can be bought by scanning the QR code for £4.99, with all proceeds going towards the £4.5m required every year to keep the hospice and our community programmes running.
“I could see Môr very clearly – he is a sea dragon for a start, quite a rarity, you know. He’s bluey-green, and he’s a baby dragon who is terribly lonely. “One evening he gets washed up on that sandbank, and he’s a bit winded and quite sad because he’s got no one to play tag with. But then he looks up and sees the lights on in the hospice and there’s a little girl there, waving to him, inviting him in, and he thinks to himself ‘Great! Now I don’t have to be lonely anymore!’ And it all started from there.” “Kids love him, you see, because Môr gets up to all sorts and is forever making mistakes – and children love to listen to other people making mistakes. And I have tried to write it so that older children will get the jokes, while the little ones love the messy bits.”
Purchase your copy here
Môr’s mischievous adventures have kept hundreds of children entertained at Tŷ Hafan over the years as Jilly has developed her little dragon and his adventures. “I made him a vegetarian dragon, you know,” she says. “After all, I didn’t want to risk him accidentally scoffing one of the kids!”
“Kids love him, you see, because Môr gets up to all sorts.”
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where the birds sing our names “These Names Will Be Forever in Our Skies” has been one of our most ambitious and poignant projects of recent times, a uniquely moving means of remembering every Tŷ Hafan child at the end of their short life. Our beautiful memorial garden is a tranquil and reflective place where recorded sound imprints of the names of each child, transposed into birdsong, plays and blends in with the natural environment. And it’s this touching tribute that inspired emeritus Professor of Poetry at the University of South Wales (USW), Professor Tony Curtis, to publish a collection of poems in aid of Tŷ Hafan with contributions from some of the best-known writers in the country.” Professor Curtis edited the anthology, entitled Where the Birds Sing Our Names, after seeing first-hand how Tŷ Hafan offers comfort, care and support to children and young people with life-limiting conditions and their families, following the funeral of a friend’s granddaughter, who had been supported by the charity. The book includes poems by USW Chancellor and former Archbishop of Canterbury, Rowan Williams; comedian and entertainer Max Boyce; singer songwriter Kizzy Crawford; and USW Professor of Creative Writing, Philip Gross, to name just a few. “The staff at Tŷ Hafan do a marvellous job,” he said. “The rooms for their children and families are kitted out with specialist equipment to help make the unbearable more manageable. “Charities such as Tŷ Hafan have been hit incredibly hard by the pandemic, so I’m glad to be able to support them and go some way to helping raise funds.”
His introductory poem explains more: Where the birds sing our names When the children pass on Their names are put into Morse Code, dot and dash, And the parents choose a song-bird – Robin, blackbird, wren and thrush – These name-notes are played as you pass each tree In the woods around Tŷ Hafan, the house-haven. Bird sings to bird across the land, A chain of notes until the trees end And the oceans begin. Then they fly beyond. So imitative birds pass on these name-notes of song Against the murmurings of the sea: Some kind of immortality. Maria Timon Samra, Chief Executive of Tŷ Hafan, said: “My colleagues and I are incredibly grateful to Tony for having the vision and drive to see this project to fruition. He has collaborated with eminent poets across the UK who have generously contributed to this lovely book. “Where the Birds Sing Our Names is an anthology of beautiful poems, with all proceeds going to support our work with children with life-limiting conditions and their families in Wales. “Every sale will make a real difference to what we are able to provide for the 270 children in Wales who we support every year, and I am sure it will make a cherished gift for lovers of poetry everywhere.” Where the Birds Sing Our Names is available to buy now by scanning the QR code below and in Tŷ Hafan charity shops across south and mid Wales.
Purchase your copy here
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