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Jemma Tierney avatar
Jemma Tierney

Jemma & Louise's Survival of the Fittest page

Raising money for my friends son for Muscular Dystrophy UK because this little champ is amazing

132 %
£1,326.96
raised of £1,000 target
by 49 supporters
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  • Team members: Louise Davis
  • Event: Men's Health Survival of the Fittest, 21 Nov 2015
  • Team: Smile with Shiv

Muscular Dystrophy UK

We fund research into muscle-wasting to improve the lives of everyone affected.

Charity Registration No. 205395 (England and Wales) - SC039445 (Scotland)

Story

In April 2014, at the age of 3, my friends caring and ever so cheeky son with the most beautiful smile that is always commented on was diagnosed with Duchenne Muscular Dystrophy.

Shiv looks like any other boy his age on the surface; but his condition means that he is getting weaker by the day. In his early teens he will lose the ability walk, by his late teens he will start to suffer respiratory complications and by early twenties he will to die from heart failure. This is typical for all Duchenne boys. Currently there is NO CURE.

Coming to terms with Shiv’s condition has been extremely difficult for us and continues to test us on a daily basis; however, very quickly after entering the world of Duchenne and speaking to Duchenne organisations, scientists and other families impacted by this terrible condition, we now know that there is hope as researchers are working really hard to find a treatment and potential cure.

We find ourselves in a race against time; we cannot sit back and wait for a treatment or cure to materialise, but need to act now to do what we can to speed up the process. for this reason we have set up the “Smile with Shiv”, and our goals are simple:

  • Raise awareness of Duchenne Muscular Dystrophy
  • Raise as much money as possible so it can be given to those working to save Shiv’s life and thousands of other children with this horrific condition
  • Work with the Duchenne community to ensure we have access to potential treatments as early as possible

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