Changing Charlie's Future
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This is Charlie, our handsome, happy, funny little boy. He and his twin sister, Freya will be 4 years old in September 2021 and his big sister, Jessica will be 6 in December.
He loves music, dancing, dinosaurs, superheroes and is often found wearing a variety of dressing up costumes and hats! He is a happy little soul and, at present, unless you know to look for a few subtle differences, Charlie is just a normal little boy.
However, in January 2021, after an agonising Christmas and New Year waiting for test results, he was diagnosed with Duchenne muscular dystrophy and our universe imploded.
Duchenne muscular dystrophy is a devastating muscle wasting disease caused by a mistake in genetic coding. The body is unable to produce dystrophin, a vital protein in muscle health and repair.
Without dystrophin, over time, the muscles degenerate leaving patients in a wheelchair, usually between 8-12 years of age and reducing their life expectancies significantly.
I will never forget the utter blackness and grief we felt. Our beautiful little boy had just had his future stolen from him by some cruel twist of genetics. Everything you hope and dream for your child, your family, just ripped from you.
In the dark days and weeks that followed, we would read what we could in our stronger moments and Duchenne UK began to offer a shard of light. A factual, pragmatic, streamlined and hugely pro-active charity with one clear aim – to end Duchenne. We drew strength from reading about all that has been achieved since two hugely inspiring mothers of Duchenne boys set it up ten years ago and all they aim to achieve.
Duchenne UK has given us light in our darkest hours and real hope that the dawn will soon break on more effective treatment for all those affected by Duchenne.
June 2021 will mark 6 months since we received Charlie’s diagnosis and as we come to terms with his condition, sitting and waiting while his muscles deteriorate is not an option. Like so many of the other families we have read about, we want to join the fight to end Duchenne and so our Friends and Family Fund, Changing Charlie’s Future was born.
In June 2021, I joined the Duchenne Dash AT HOME, pledging to cover 200Km over 6 weeks. Having not ridden a bike in at least 10 years, I wasn’t sure how I’d get on, but I have been amazed on so many levels!
Primarily, the kindness, generosity and support of people has been tremendous and of huge comfort to us. I am not one to shy away from a challenge and actively doing something that will be of benefit to Charlie and all Duchenne boys has made it very enjoyable.
It’s also been a form of therapy for me and given me a bit of space, time to think, time to grieve for the life our family won’t now have but also time to be thankful for all that has already been achieved for Duchenne boys and what the future might bring.
Charlie is such an energetic little boy, and it fills me with utter joy when I look at him and his sisters just loving life, but it also breaks my heart in knowing what the road ahead looks like if more effective treatments are not discovered and developed.
Nothing will change this devastating diagnosis for our son or any of the other boys, men and rare girls affected by Duchenne but……the outstanding work and research that Duchenne UK is funding might change their futures.
Please help us in Changing Charlie’s Future
Published on 31 May 2021Share this article Categories Family and Friends Funds