Nineteen-year-old Liam is just like any regular young person. A supporter of Liverpool F.C., Liam loves going to the cinema, hanging out with his friends, and playing video games. He’s an avid player of power hockey and power football and has just finished his first year at University, studying history. Yet Liam has faced more challenges than most in his 19 years; he lives with Duchenne Muscular Dystrophy, a muscle-wasting disease, and uses a wheelchair to get around.
For 11 years, Liam has been cared for by Claire House, a children’s hospice based in Merseyside.
“I was around eight when my consultant neurologist referred me to Claire House. I remember when we first got there and were given a tour that my first thought was ‘wow’. There was just so much there to do, and seeing the hydrotherapy pool was really cool.”
Liam was first referred by the Alder Hey consultant for hydrotherapy – a type of physical therapy in water, which for wheelchair-user Liam was a huge help.
Hydrotherapy has transformed his symptoms
“I went once a week, and I think it has been one of the biggest helps with my symptoms. It’s such good exercise and is the one place I can walk. I absolutely loved it and have just started it again recently.”
Alongside hydrotherapy, Liam began to use other services the hospice offers, like respite breaks for him and his family, and counselling.
“Caring for a child with disabilities is non-stop for a parent. I know my mum worries and that it can be a lot. Going for short breaks at Claire House meant that she could relax, knowing I was safe and someone she trusted was looking after me medically.
“Claire House also has parent support groups so they can meet people who know what it’s like, counselling for the whole family and siblings days out, which have been a massive help.
Making friends and memories for life
However as Liam got older, he began to notice that there weren’t a lot of young people similar to him that he could connect with while visiting the hospice. Andy and Alex, who work with young adults like Liam at Claire House, noticed, spoke to him and most importantly – listened. And so, the social group was born, something that has transformed Liam’s life.
“It was in 2017 that we had our first social group meet and since then it has grown so much. It’s full of young people like me, who have fulfilling lives to lead but just needed that little bit of a boost and encouragement to do so. We meet once a month at Claire House, and we have days out together.”
From racing round a track in their favourite supercars and being chauffeured through London in a convoy of Bentleys, to cinema trips, trying the hottest sauces at Nando’s and watching football matches, Liam has made lifelong friends and memories.
“One of my favourite memories was the 24-hour game-a-thon we did together to raise money for Claire House. We played boardgames and video games and held a FIFA tournament, which ended up feeling just like a football match with all the teams and cheering going on!”
The group is currently busy planning their first-ever holiday together. Alongside the experiences, the group has had a huge impact on the lives of young people like Liam outside of Claire House.
“I played power hockey and power football before a came to Claire House, but since then, they’ve started holding taster days for young people like me to try it out and now pretty much half the team come from the hospice. We went on to win our first ever national power hockey championship and my power football team play in the Second Tier National League in England. We have a proper community there now because of Claire House encouraging people to try something new.
They’ve given us a real sense of independence, they listen to us and the social group has given me so much confidence in meeting new people, making friends and trying new things. It played a massive part in me feeling comfortable enough to go to uni, move out from home and make friends there.
Calling on the Government to maintain the vital Children’s Hospice Grant
Liam is joining our campaign to save the Children’s Hospice Grant, which is due to end this year and is a vital source of funding for hospices like Claire House.
“Claire House means so much to me. It’s been a constant for over half my life and it’s so important that their services, and those at children’s hospices across the country, are protected. Things like hydrotherapy, respite and counselling aren’t offered by the NHS, and if they take those away, it will end up costing the NHS more money, take up bed spaces and make waiting lists even longer. They are so vital to so many people like me and without them we would really struggle.
“Please join me in calling on the government to save the grant and protect hospices like mine.”