Hello and welcome to SayHelloToEdward.com. Thank you so much for visiting our site.
Edward Ackroyd is five years old and has Duchenne Muscular Dystrophy, which is a severe muscle wasting disease, which leads to paralysis and limited life expectancy. Nearly all of those affected are boys, who are likely to be using wheelchairs by the age of ten through the progressive loss of muscle function, and needing full time care by their late teens. Surviving beyond their teenage years is rare.
Duchenne Muscular Dystrophy affects 1 in every 3,500 boys just like Edward, and occasionally little girls
also. With 40,000 sufferers worldwide, awareness of DMD is very low, which made the diagnosis
particularly shocking for Edward's parents, Heidy and Paul, and is a devastating reality for all Duchenne
boys.
The charity Action Duchenne works with people and families affected by Duchenne by raising awareness
of this terrible condition, providing a support network, raising funds required to support research into
a cure, and tirelessly campaigning toward better medical care for this condition, and we are trying to
help.
In order to help Edward and others like him, we are asking for three simple things. The first is to watch the music video of our song ‘Never Say Goodbye’ by clicking on the link to the left. Then, if you’re able, we’d be really grateful if you could click on the Donate button in the bottom right hand corner which will take you straight to the Just Giving site. 100% of the money raised will go directly to the charity Action Duchenne. Finally, please leave Edward a message on the Say Hello page on this site.
To find out more about the charity Action Duchenne, please click on the link at the top of the page. Information on a few of the people who have helped with the campaign, and especially the production of the track and video of Never Say Goodbye, can be found on ‘About Us’. And ‘Heidy’s Blog’ enables Edward’s mum to keep us all updated on what’s happening with the campaign to find a cure for DMD.
From Edward, his brothers Samuel and Thomas, his devoted parents Heidy and Paul, and all of Edward’s friends, thank you.
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