Wirral mum hopes video will help save son's lifeI read this story in the Wirral Globe this week and felt really sorry for this lovely young boy and his family and decided to give them a bit more publicity by posting it on this forum to give more people the opportunity to help them.
A WIRRAL mum, whose little boy has a severe muscle wasting disease, is hoping an internet video will save his life.
Kelly Magee, from Prenton, has posted a video on YouTube to educate viewers on her two-year-old son’s condition, Duchenne Muscular Dystrophy, in the hope that they will sign a Government petition.
The 32-year-old is hoping the four-minute montage, which is set to Coldplay's 'Fix You', will tug on people's heartstrings and encourage them to back her petition to fund research into the rare condition.
And Kelly is desperate to spread the word about Duchenne's and highlight the impact it has on its sufferers, including her son William.
She said: "We found out about William's condition last year after he was taking longer to learn to walk and kept falling over.
"I immediately threw myself into fundraising and raising awareness as few people know about it.
"Our petition is basically to get the Government to fund research into Duchenne's.
"It's possible that once the money is there, it could take just a couple of years to find a cure. However we need 100,000 signatures for the matter to even be considered in Parliament so I came up with the idea of a YouTube video.
"The video shows children at different stages of the disease. It's very emotional and heartbreaking to watch but that's what you need to do to make people think about it.
"We managed to get permission from Coldplay to use their song which adds to the impact of the montage."
Duchenne Muscular Dystrophy is a progressive, aggressive muscle wasting condition which is most common in boys.
Symptoms usually begin in the legs and pelvis before the disease slowly takes away all use of the body's muscle, leading to eventual death.
And Kelly, who is also mother to eight-year-old Elizabeth, said her family’s world has been rocked by William's diagnosis but is hoping other parents will support her plight.
She said: "There are around 2,500 children in the UK with the condition. It seems like such a small number but it is horrific and is guaranteed death.
"I would say to other mums out there to imagine waking up every morning and finding out that someone you love has passed away.
"I feel like I am grieving every day for William, grieving for what he has already lost and grieving for his future – he will never be able to give me grandchildren, get married or play football with his friends.
"As a mother, I feel an enormous sense of guilt for also giving my daughter a little brother with this condition.
"She absolutely adores him but how do I explain to her what may or may not lie ahead for him?
"I am hoping that enough people will watch the video and follow the link to sign the petition – we need their help so much."
A family fun day will be held in aid of Duchenne Now on August 19 at White's Farm, Station Road, Thurstaston.
It will take place from 12pm – 4pm and include raffles, donkey rides and makeovers.
That is Williams story please watch his video, it is heartbreaking to think all theses lovely youngsters are not going to live much past the age of twenty This is the link :-
http://www.youtube.com/watch?v=yoKPBJhDONc It is called Fix You & William Duchenne.
When you've watched this video if you can see through the tears go to the epetition page at
http://epetitions.direct.gov.uk/petitions/14427 The petition is not going too well as yet so if you decide to sign include all members of your family.
There is also a web page with an appeal to buy a song off I tunes for 99p the link to which is
http://www.savewilliamduchenne.co.uk/ Sorry if this is a long and rambling post but I was touched and believe many of you will want to help even if you only sign the petition.
This story is also an illustration that we should be grateful for what we have and that there is always someone worse off than youself.
