the family hospice for young lives. cwtch Newsletter: Spring/Summer 2013 Inside... • X Factor visit • Cwtch Corner • Superheroes wanted! welcome... To the spring / summer “When the Palliative Care Consultant told mum and dad and of course me edition of Cwtch. that I was being referred to a hospice we knew it wasn’t good. I was a pretty We are continually overwhelmed by the poorly young person. support and generosity of the people of Wales. We simply couldn’t continue It’s had many names this disease of without you. mine. ACD syndrome is one of them – they are my initials by the way. But in Did you know it costs around reality, I have no diagnosis. £10,000 to open our doors each day? We were invited to go to Tyˆ Hafan for lunch one day in December some four years ago. I thought it would just This figure is likely to rise because we be another hospital with different are seeing more and more life-limited coloured walls. Oh my, how wrong I children, young people and their was. families in need of our services. We know times are hard, which makes From the moment we set foot us even more grateful to everyone who in there we all felt a sense of has played a part in supporting our calm. Not a sad calm, but a vital work across Wales. nice calm that makes you feel We thought we would let Amy-Claire safe even when you have the explain how Tyˆ Hafan makes a butterflies in your tummy. I get difference to her: those sometimes when I think about what’s happening to me and my family. I get scared and 2 providing care, being there welcome... wonder what my future may So my journey with Tyˆ Hafan bring or not as the case may be. isn’t a sad one like people It’s not easy sometimes. assume when they think of a hospice. No, it’s a journey that It’s a bit like a secret club that you has given me an abundance of don’t want to be in unless you have no happy memories. choice, and then if you have no choice it’s the only club you want to be in. It’s truly amazing! With Tyˆ Hafan by my family's and my side, my life has become a life worth They let me be me with all the fighting for. baggage - the terrible spasms, the screaming back pain, the abundance I hope that everyone continues to of medication that takes hours to support Tyˆ Hafan. It really does make administer, the feed pump, the catheter such a difference.“ and so forth. Amy-Claire Davies See the thing is I am sick. I am a young Aged 18 person with very unpredictable health, but underneath it all I am still me - the teenager wanting to go night-clubbing, watch bands and I am still waiting for the love of my life to whisk me off my feet. Tyˆ Hafan recognises that in me. www.tyhafan.org 3 x-tra special surprise! Youngsters at Tyˆ Hafan were treated Lewis Gasson, a huge James to an extra special surprise when stars Arthur fan at Tyˆ Hafan, said from the X Factor turned up to bring a little sparkle into their lives. it was “amazing” to meet the stars. The 12-year-old from Singers from the show including Cardiff, who suffers from winner James Arthur, Rylan Clark, Ella Duchenne Muscular Dystrophy, Henderson, Jahmene Douglas and groups Union J and District3, were all said: “We had such a good on hand to provide an entertaining time. I’m so pleased that I met afternoon for the children and their them all." families at the Hayes Road hospice. Rylan Clark clearly enjoyed the There were plenty of smiles all round afternoon. Shortly after leaving he as the singers spent time with babies, tweeted: “What an inspirational bunch toddlers and young people. of people at Tyˆ Hafan children’s hospice. Thanks for a great visit. See you all soon. ” Ella Henderson also tweeted: “What incredibly strong families at Tyˆ Hafan hospice x x pleasure meeting u all!! ... & thank u for my drawing!” 4 providing care, being there x-tra special surprise! The visit was organised through Together for Short Lives, the UK charity for all children with life-threatening and life-limiting conditions and all those who love, support and care for them. All the proceeds from James Arthur’s winning single, "Impossible", will be donated to Together for Short Lives to support children’s hospices like Tyˆ Hafan and other voluntary organisations to sustain their vital work. www.tyhafan.org 5 casey’s story Casey was born with extensive brain The Newport family have visited the damage following complications at hospice for short-breaks several times birth. He has since been diagnosed in the last six months, making sure that with severe epilepsy, spasms, cortical mum and dad have time to rest and visual impairment and evolving unwind with nine-year-old daughter cerebral palsy. Reagan. His condition means he needs 24-hour Mum Nahella said the referral care and it’s unlikely he will ever be couldn’t have come at a better able to walk or talk, placing a huge strain on the whole family. time. “I really don’t know what we would have done without Tyˆ Hafan’s support is needed now Tyˆ Hafan,“ she said. “They have more than ever because his dad become an extended part of Anthony is battling a brain tumour for the family and have completely the second time. The whole family have been devastated by the news but are changed our lives.” comforted by the knowledge that they don’t have to face One-year-old Casey enjoys spending their journey time at the hospice and is always alone. smiling when he’s there. “You can see he becomes instantly comfortable when he arrives and he sleeps so much better as well,” said Nahella. 6 providing care, being there casey’s story “He loves the sensory area It also means she can still have fun and the arts and crafts room. and enjoy her childhood, despite the amount of time that her mum and dad He can’t see very well so need to devote to looking after Casey. the sensory elements are so beneficial for him.” “The hospice has had such a positive impact on us; not only And the care doesn’t stop at the hospice. Shirley Valentino is Casey’s do they care for all Casey’s Family Support Practitioner and visits needs, but they also support the family regularly at home. the whole family as well, “ said Nahella. Shirley said: “It’s hard to imagine what Nahella and Anthony must be going “It’s a really homely through, but I give them the chance to talk, to share their fears with each environment and I know it’s other and help them have the energy where we’ll want to be for end- to give Casey and Reagan the care and of-life care. It is a truly amazing support they need.” place and I can’t thank them Reagan has joined Tyˆ Hafan’s enough.” Super Sibs group, which gives her the chance to make friends with other children who understand what having a life- limited brother or sister is like. www.tyhafan.org 7 the big screen comes to tyˆ hafan For some youngsters at Tyˆ Hafan, even Preparations are already underway for making a simple trip to the cinema is cinema club nights, gaming sessions physically impossible. and ‘sing along’ evenings. The life-limiting conditions facing The installation has been completed children and young people supported as part of the Together for Short by the hospice can cause significant Lives campaign, organised by Ian mobility problems which prevent their Morrish, sales manager at ISE. Mr enjoyment of normal activities like Morrish said: "This has been another going to see the latest film. wonderful result and one that simply would not have taken place without the But now, thanks to a donation from assistance of RGB Communications, RGB Communications, the cinema and of course, the continued experience has come to them! The generosity of several manufacturers." hospice is now the proud owner of a home cinema which boasts five wall Thanks to the large range of speakers, a Blue-ray DVD player and a products and all the time and hard projector. work provided free of charge, the installation has saved Tyˆ Hafan more than £10,000. These savings will help support children and young people with life-limiting conditions and their families across Wales. 8 providing care, being there tyˆ hafan is new charity for st david's Wales’ leading shopping destination, St David’s Dewi Sant, has chosen Tyˆ Hafan as its new Charity of the Year. Throughout the year, staff and shoppers at St David’s will be encouraged to take part in a wide range of fundraising activities to support the charity’s work. Tyˆ Hafan will be visiting the shopping centre to promote fundraising events, hold bucket collections and highlight the charity's work through a variety of promotional activities. A number of retailers located in St David's will also be donating the proceeds of their 5p carrier bag levy to T yˆ H a f a n . Frank Ady, Head of Business and Community at Tyˆ Hafan, said: “We are delighted to have been selected as Charity of the Year for St David’s and look forward to working in partnership with them over the next 12 months.” www.tyhafan.org 9 A family’s journey Archie Watson has been receiving It became apparent that Archie was end of life care at the hospice and his on shut down and there were obvious parents, Brad and Lauren, have been signs that he was giving up.