making muscle wasting history

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About us

On 24th April 2010, our little boy Alex was diagnosed as having Duchenne Muscular Dystrophy at the age of 4. As you can image this has come as a complete shock to us, our family and friends and we are only just trying to make sense of it all.

In a nutshell boys with Duchenne are likely to be in a wheelchair from age 9-15 and are unlikely to be able to move by 20. Because the heart and lungs are muscles they too become affected so it is likely that they won't see past their mid to late 20's. HOWEVER with medical science they are on the verge of finding a cure they just need money and time to bring this to market and that's why we need your help.

Alex has already started a course of steriods and he seems to be showing promising signs which could well mean that it will delay the effects for as long as possible and give him the best chance possible.

Because we have diagnosed this condition in Alex early on it will hopefully put us in a good position, he is already getting all the right support he needs from physiotherapists and consultants this is all going to help massively. But it doesn't mean that we should stop hoping for a cure to give Alex a better chance in life!

We are remaining very positive and will do whatever it takes to help Alex and other boys with this condition. Thanks to all our friends and family for being so supportive - you are all amazing!!!

About Alex

Alex is a very outgoing little boy, he loves nothing more than playing with friends in the back garden, especially football. He's got great hand to ball co-ordination and we hope to keep that going for as long as possible.

Alex is a lovely natured boy and loves lots of cuddles and kisses. He adores going to school as he loves being active and making the most of life.

Alex knows he has poorly muscles, but that's all he knows at the moment (it's all he has to know), we just want him to make the most of life right now! In the meantime charities like Action Duchenne give us hope that we will be able to find a cure.

About Muscular Dystrophy

Muscle diseases cause muscles to waste and weaken making it hard for those affected to do even the simplest of tasks. The conditions don't just affect the muscles in the arms and legs but the heart and respiratory muscles too. It is a life limiting disease. There are no cures at present. Duchenne is a genetic condition that affects mainly boys. Boys with Duchenne are only likely to live shortly beyond their 20's, which is why we need to find a cure and fast!!

Action Duchenne was established to find a cure or more effective medicines to treat Duchenne Muscular Dystrophy. Since 2001 they have funded key research projects and supported clinical trials that are making real progress towards our key aim.

Their Medicines for Duchenne programme is now producing real results in terms of clinical trialling new drugs to treat Duchenne Muscular Dystrophy.

Let's get right behind the 'Stop wasting' campaign right now. We don't have a moment to waste.

Previous Events [7]

• Lily Brenchley's Funeral Fund - 09 January 2012

  Hello,
  
  The funeral for Lily Brenchley will be on Monday 9th January at 2pm. There wil...

• Lisa's 40th Birthday!!! - 19 March 2011

  Lisa has kindly requested that family and friends donate money should they wish to, to Action Du...

• MAB's Sales Conference - 28 February 2011

  Action Duchenne is one of MAB's 2010 chosen charities.

• School Fundraising - 28 February 2011

  Rachel who is a parent from school decided to stop smoking and asked all her friends and family ...

• Donna Brenchley's Birthday Bash - 19 November 2010

  The money raised came from commission earned from clothes bought on to the night as well as kind...

• Tandem Sky Dive - 02 October 2010

  Myself and 6 others took to the skies to raise money for Action Duchenne raising a staggering £5...

• In loving memory of Alex's gran (The Elsie Houghton Fund) - 31 August 2010

  Elsie is Alex's grandmother who unfortunately passed away on 13th July 2010 at just 55 after los...

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