George was diagnosed at Great Ormond Street Hospital with Duchenne Muscular Dystrophy (DMD) at the age of 8. A genetic muscle wasting disease with no cure and 100% fatal! We can't begin to explain the heartbreak, sadness, tears, the anger, the emotional pain we feel, and devastation that this is really happening to our son...our family....but it is!...This terrible progressive and rare disease is very real, and could happen to any family. With endless hospital appointments our life journey has changed forever from one blood test!

DMD is the most common killer in boys and the severest genetic muscle wasting condition. There are approx 3500 people affected (mostly boys), and it is caused by a mutation in the dystrophin gene. Dystrophin is a protein that is vital for muscle strength, and boys with DMD are missing this in their bodies. Their muscles gradually get weaker, which starts in their legs and progresses to the upper bodies. They are expected to be in a wheelchair by the age of 12, with life expectancy mid to late twenties.

George finds it hard to walk, run, climb stairs and keep up with his friends, although he loves to go swimming, horse riding, karate and ride on his bike which we are so grateful for. The exercise, steroids, nights splint on his legs and physio all help to keep him as strong as possible for longer, but we can see him getting weaker month on month. George is such a kind and caring boy and we are very proud of him and his achievements. Whilst George is weaker physically, he is amazingly strong mentally and emotionally, and so very brave! He doesn't know what the future will hold and we plan month on month, enjoying all the little things in life to the full. We pray that a cure for the disease will come in time that we never have to explain the future!