On Friday 19 May I organised a sweet sale in aid of Duchenne Muscular Dystrophy. Duchenne is a life limiting muscle wasting condition that can either be inherited or can result from a one-off gene mutation, which was the case for my 9 year old relative Hayden. Despite the conditions rarity, 1 in 3500 male births, it is still the number 1 genetic killer of children in the UK.
Hayden who turned 9 in May was diagnosed just before his 4th birthday, he has blond curly hair, blue eyes and very happy and full of life. He attends mainstream school and can join in with most of the activities, though he is not as mobile as his peers. He loves swimming, reading and horse riding, it really helps with his confidence and balance. The only signs of his condition are that his walking is very slow, he has an odd gait, struggles to run or jump, and frequently falls over. He knows he has Duchenne, but doesn’t know the full impact of the condition, wheelchair bound by 10, paralysis late teens and terminal at 28. He is not fazed by the many hospital visits he has undertaken and the medical team he sees. There is currently no effective treatment for the condition and no cure, although there have been some very promising trials. Action Duchenne are a very small charity providing research funding and give invaluable support and hope to families and patients, and as a family we are continuously helping to raise funds to hopefully find that break through and find an effective treatment.
Thank you to staff and pupils at St Gabriel's for buying sweets and helping me to raise £223.71 for Action Duchenne.
Olivia C. 8S