Children's Hospice Week (13 – 20 June) is the UK's only awareness raising and fundraising week for children with life-limiting conditions and the services that support them.
Tŷ Hafan, the family hospice for young lives, currently cares for 259 children and young people not expected to live into adulthood.
Of the children and young people who currently use Tŷ Hafan’s services, 37 suffer from Duchenne Muscular Dystrophy (DMD) – making DMD the largest group of all the life-limiting conditions referred to Tŷ Hafan.
DMD is a neuromuscular condition, affecting around one in every 3,500 boys, and symptoms generally appear in children before the age of five.
By the age of 10 most boys will use a wheelchair and although life expectancy can vary, many boys do not live beyond their teens.
Many of the boys and their families have been spending time at Tŷ Hafan since it first opened in 1999, and several good friendships have been built up over the years. The boys spend a lot of time in the specially equipped Adolescent Den, playing on the latest games consoles, and they love being taken out to the cinema by the care staff to watch the latest film.
Sophie Williams, a palliative care nurse at Tŷ Hafan, said: “I’ve supported a lot of boys with DMD, and I feel privileged to have helped them and their families to cope with a truly cruel condition.
“It’s a condition that would devastate most people. But the boys that I’ve supported at Tŷ Hafan have an infectious enthusiasm for life – despite knowing that they will have very short lives.
“It’s a very important part of my job to create a safe environment for the boys; an environment which focuses on what they can do, not what they can’t do. Mums and Dads need to know that the people who are looking after their children are experts and fully understand the care their children need.
“As the boys have grown older, we’ve helped them to come to terms with life in their wheelchairs and made sure that they’re able to enjoy the same things as their friends.”
There is also a qualified chartered physiotherapist at Tŷ Hafan, to provide the boys with the physiotherapy they need. The main focus of the therapy is to maintain what movement, function and independence the child has for as long as possible through stretching, strengthening, respiratory and positioning.
In addition to the physical care of the boys, Tŷ Hafan also provides the emotional and social support to the older boys, who are coming to terms with the deteriorations in their physical mobility and skills at a time of their lives when all their friends are beginning the make the most of their teenage years.
Tŷ Hafan is also there for the whole family to ensure they get the assistance they need when caring for a young boy or teenage boy with DMD. The care services team work very closely with professionals in the community on behalf of the families of these boys to help them access the appropriate services and get the necessary home adaptations and equipment that they will need to help them cope with their condition.
Sophie said: “Unfortunately there is no cure for DMD and so every year boys in Wales will continue to be born with the condition. At Tŷ Hafan it is our mission to be there for every family in Wales who needs us.
“It can be very difficult to watch these boys grow up and see them unable to enjoy things that other teenagers take for granted. But I feel proud to have touched their lives.”