Story
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On 21st April Jess & Jack will be running the London Marathon to raise funds for Duchenne’s Muscular Dystrophy support. Just one year after an Achilles rupture, Jess is not a runner at all but having spent a lot of time last year being unable to walk, is able to appreciate just a tiny part of what some young people like Albert go through every single day. We will be running for those like Albert that cannot.
Albert is 7 years old. He goes to Denfield Primary School. His favourite song is 'Gimme Gimme Gimme' by ABBA, he loves playing Minecraft & Super Mario on his Nintendo Switch, and he knows everything there is to know about cars (especially Land Rovers!) and washing machines. When asked what he wants to be when he grows up, he said he wants to be a bank robber!
Albert also suffers with a genetic disorder called Duchenne Muscular Dystrophy. This is an inherited disorder that causes progressively worsening muscle weakness. It affects young boys in their early childhood, starting with delayed development and continuing with increasing difficulty with movements such as running, jumping and everyday things such as getting up off the floor. Movement becomes harder as the disease progresses, and most boys will need a wheelchair by the age of around 9. As the muscles continue to weaken it can lead to complications with breathing, & eating, seizures and heart problems. There is no cure.
When we first met Albert, he was able to get out of his wheelchair and walk for short distances, hold himself up in a playground, throw and catch balls, roll down hills and enjoy being a little boy as much as his disease allowed. Sadly his disease has now progressed to the stage where he needs a wheelchair full time, he can no longer do these simple things by himself, and needs help with things like getting dressed and going to the toilet.
This is the same story for every little boy like Albert. The disease progresses at different rates, but for all sufferers of DMD, they will not live past their 20's.
However, we can help Albert and other boys suffering with the same condition to enjoy being an independent little boy for as long as they possibly can.
Improvements in treatment and research on new drugs is increasing life expectancy for DMD patients, and with the right funding, research into Duchenne's Muscular Dystrophy will result in advances in treatment, and young boys like Albert being able to experience things that every young boy should. Things like school proms, graduations, first loves, family holidays, precious memories, can all be made possible with your help. Funding can also help charities provide physical treatment such as therapy sessions, wheelchairs, adapted living, social events and much more.
This would have a huge impact on the quality of life for young boys with Duchenne's Muscular Dystrophy, who are robbed of a 'normal' life. I will be running for Albert and all the other little boys that no longer can. Your support can make a huge difference too. Please consider donating to this cause if you can - thank you!
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