Alex’s Wish is a local charity based in the heart of Leicestershire and was set up in late 2012 by Emma and Andy Hallam, parents to Alex – after whom the charity was named.
Alex was just two weeks away from his fourth birthday when he was diagnosed with Duchenne Muscular Dystrophy, an aggressive form of Muscular Dystrophy that affects 1 in every 3,500 boys born and results in total paralysis. Every single muscle is destroyed in their bodies due to a lack of protein and it affects the heart and lungs as these are muscles too. Two families per week in the UK will receive the same devastating news.
The diagnosis came completely out of the blue and it’s fair to say was a huge shock to Emma and Andy particularly when they heard what the prognosis was going to be:
- Boys with Duchenne will be in a wheelchair by the time they’re 10 years old
- It leads to complete paralysis by their late teens
- Life will be drastically shortened with boys typically only living into their mid-twenties
- There are no treatments other than steroids which have serious side effects
- THERE IS NO CURE
Once the initial shock had worn off Emma and Andy knew they couldn’t simply sit back and do nothing. Having spoken to some of the leading scientists, Professors and other charities from around the world working on Duchenne, we knew work was being done to help bring about new treatments – but more funding was urgently required to continue researching this condition and trialling new drugs. Having raised over £40,000 for two charities working on Duchenne in the UK, Emma realised that if she was to raise substantial amounts she needed to set-up a charity of her own and so Alex’s Wish was born.
What Does Alex’s Wish Do?
Alex’s Wish raises vital funds to help bring effective treatments to boys suffering with Duchenne as quickly as possible. As Emma says, “If we can help boys stay mobile for longer, keep them as healthy as possible and help build their muscles, we will have done a good job. Until then, we have much work to do and will continue raising funds until new treatments and – ultimately – a cure is available for everyone affected.
“We’re a lean charity. The charity’s Trustees and I take nothing out for ourselves at all and we promise that money raised will go towards funding new projects that will either help bring about new treatments or help fund vital work to ensure that as many boys as possible can take part in clinical trials. We keep our costs to a minimum and spend very wisely giving only to projects that have been through a stringent scientific advisory board ensuring they are fit for purpose and will work within a timeline we are happy with. After all, we want to conquer Duchenne for this generation.”
The First To Survive….?
Emma and the wider Duchenne community are fighting hard for this generation of boys with Duchenne. Adds Emma, “We have achieved so much but there is still so much more to do. Many within the Duchenne community feel that this generation of boys will either be the first to survive this horrible life-limiting condition… or be the last to die of it. I know which ending I want for Alex and for every boy with Duchenne”.
Inspiring you to do Something Amazing
Alex’s Wish are reaching out to Soar Valley Life readers and inviting them to do something amazing for their charity. With a range of events on offer throughout the year there really is something for everyone from Sky Dive Sunday, through to watching the new Addams Family musical at The Little Theatre in Leicester; and then, of course, there is the annual Charnwood Forest Cycle Ride!