making muscle wasting history

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On 24th April 2010, our grandson 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.

At first we just couldn't believe it, how could he, he's so normal and healthy. And why him, this wasn't meant to happen. Now we have to re-think everything and make the absolutely most of life right now, as we don't know what the future is going to hold. Although to be fair it's very much laid out for us as we have had to read so much info on the disease and what it will mean at each stage of Alex's life. And believe me it isn't easy reading, quiet the opposite in fact!

For Alex's parents, their life will never be the same again. They think about what might lie ahead for Alex and every day and just wish it would simply disappear. But it won't so we need to do everything in our power to support charities like Action Duchenne to fight for new drugs, a cure and more support as the government hasn't been that forthcoming to date.

We are a positive family, always making the absolute most of life as you never know what it might throw at you. Whilst we have had the news that our little grandson has Duchenne MD we are trying to come to terms with it and now planning lots of charity work to help support the fantastic work that Action Duchenne have done and are doing. It's the only way we can deal with it - to do something positive, we have to believe there will be a cure. And we need as much support and help as possible to make this a reality!

About Muscle Disease

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.

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• Tandem Sky Dive - 02 October 2010

  On 24th April 2010, our grandson Alex was diagnosed as having Duchenne Muscular Dystrophy at the...

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