Never Say Goodbye

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.

Category:

Nonprofits & Activism

Tags:

• Say
• Hello
• To
• Edward
• Ackroyd
• Duchene
• Duchenne
• Muscular
• Dystrophy
• Non
• Profit
• Charity
• Action

[jerzeytpke]

My sons best friend (really a brother to him) since he was 7 has this. He never walked ran nothing. He is going on 17 and its getting very bad. My son as a little boy used to stand on the back of his motorized chair..............they would spin around town. They held an iced tea stand to help a neighborhood boy get a new bike and this poor kid never was able to ride a bike. God help us all.

[cutechicktaisha]

I have no idea who you are, but i would just like to comment that this is the disease my uncle has, he's now in his late 40s, but was predicted to not live past 5, he's a fighter, yes. but i can see that edward is too. your family are in my hope and prayers, all my love, Taisha xx

[snazzx]

hi edward. it's isabelle, mrs lewin's daughter from pre-school.

just to let you know we're thinking of you. have fun with the filming. sounds exciting. love the video. xxxxxxxxxxx

[cooldit1]

dont feel too sorry. There are worse diseases than this. I live everyday to the fullest, no complaints. Please dont feel too sorry for us. We are mostly a proud people and happy. I have duchenne, but do i ever actually suffer from it? NO! That'smy way of life. No happiness causes suffering. I know what can happen to me, bbut never, never do i think about what will happen to me. Just my opinion.

[xogreengiantox]

he sung it because it was a local thing.... the music composer, singer and Edward was from the same town.... and he does singing on Cruise ships and stuff i think

[asemooneaabi]

edward i wish u all the best. You are very cute, and this video was very nice. I am a student studying biology at university and i am planning to become a researcher. I will do my part, so one day we can find a cure. take care.

[djark2008]

this is so upsetting and it really makes me feel so sorry for people that have Duchenne Muscular Dystrophy, best of luck with this song and video by the way xx good look edward hope all goes well for you xx

[terrorstorm666]

I support the cause completely, i totally wish the best for this kid and everyone else with his condition.

But seriously, there are a million better singers than this guy! I just hope other people hear past this, because i couldnt.

[Branderworld]

best of luck with this guys!!

[TUBEHACKPRODUCTIONS]

good song hope it all goes well