Duchenne UK

Muscles for Mitchell

Muscles for Mitchell is a Family & Friends Fund supporting Duchenne UK
by 1 supporter
RCN 1147094

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In the summer of 2014, our son Mitchell, then 5 1/2, took part in school sports day with the rest of his reception class. I noticed how he struggled to run short distances, fell down a lot and was out of breath after just a short run. He had large calves and my friend commented that youd expect him to run really fast with those calf muscles. That comment stayed with me and I casually Googled, large calves in boys, frequent falls. I was faced with pages on muscular dystrophy and it began to dawn on me that my beautiful boy could have this condition. Lots of things started to make sense. Why he used to hold the rail so tight to get up the nursery steps. Why he disliked snow. And why he complained of walking even short distances. Id never heard of Duchenne muscular dystrophy and theres no history of the condition in my family. We were referred to a specialist and I hoped that I would be told that I was an overbearing mother and that all was well. The look on the consultants face, told me that all was not well. Mitchell received his official diagnosis, following genetic testing on the 9th September 2014. Four days after my 40th birthday. At the time, we were just devastated. Its such a cruel disease and to learn that there are limited treatments and no cure is very difficult to come to terms with. Our little family felt changed forever and the future that we had imagined was fading away.

Over the next few months, as we processed the news, we got to know other families living with the condition through social media and became aware of the numerous charities doing great work to accelerate research and hunting for better treatments for our boys. Fundraising became our hope. On 1st February 2015, we launched Muscles for Mitchell to support Duchenne charities on their mission to find potential treatments for the condition.

Mitch turned 12 in January 2021. He is very silly. He loves his Xbox, remote control cars, sports cars (and cars in general) dogs and running around with his friends. He is very competitive, doesn't like school work much but is gregarious, social and very funny. He is a happy boy and enjoys his life very much. As a family, our focus is on ensuring that he has equal opportunity to be the best that he can be, whilst supporting him in understanding and managing the limitations of his condition.

Duchenne UK has proven to be a driving force in accelerating research opportunities and changing the landscape in the UK for clinical trials. Although we have accepted Duchenne as part of our lives now, we will continue to fight for better treatments and hope for a cure for our special boy and all the children living with Duchenne. This is why we have set up Muscles for Mitchell as a family fund with Duchenne UK.

Family Tinkler (Kate, Steven, Ellie and Mitch.)

About the charity

Duchenne UK

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RCN 1147094
As the leading Duchenne muscular dystrophy (DMD) charity in the UK, we want to find effective treatments for DMD and end its devastating impact. We’re going further than anyone has before, and we’re doing it faster, because this generation of people living with DMD can’t wait.

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