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Title: Never Say Goodbye View count: 9005 Rating: 5.0 (15 ratings) Description: 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 reseach 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 have recorded a single called 'Never Say Goodbye' which we will release in the very near future. We are creating a video to accompany the release along with a website and more, but we really need your help. Because we cannot afford an advertising campaign we are relying on word of mouth and our Super Cheeky 'Cunning Plan'. The more people we have supporting us, the easier thing will be so please join us and invite your friends to join too! We'll let you know what to do when the time comes... ;-) To find out more about the charity Action Duchenne, please go to www.actionduchenne.org. From Edward, his brothers Samuel & Thomas, his devoted parents Heidy & Paul, and all of Edward's friends, Thank you. Tags: say, hello, to, edward, ackroyd, duchene, duchenne, muscular, dystrophy, non, profit, charity, action, Author: SayHelloToEdward01 |
