John was diagnosed with Duchenne Muscular Dystrophy when he was one. The condition causes his legs to weaken and so he struggles to keep up with his friends. When diagnosed the news hit us for six – not only was it completely unexpected but he was also such an active, determined and vibrant chap – it didn’t seem to make any sense. Since then, these qualities have been ever present. He enjoys a challenge and has a tremendous zest, instead of feeling sorry for himself he just gets on with it.
John wants to help other kids too. Once a week he goes to Great Ormond Street Hospital to take part in clinical trials for a treatment for his condition. The trial can be tiring and uncomfortable, but he seldom complains and is committed to help to find a treatment that could benefit hundreds of children.
You might think that with John’s condition he’d be well-advised to take life as easy as possible, while avoiding risk and accepting life has to be different for him. Not a bit of it. It’s just not his mentality.
Hunger To Get On And Live
We have struggled to find a wheelchair for John that suited his outlook on life and hunger to get on and live each day to the full. Initially it was rather depressing trying to find a powered wheelchair that is deserving of a young man who doesn’t want to be held back.