Family launch fund-raising campaign to find cure for son’s muscular dystrophy

LOVING FAMILY - Dillon Mulvey with dad Ryan, mum Julie and sister Ella

WATCHING young Dillon Mulvey bounce around his living room with sister Ella, you’d be forgiven for thinking he was just another carefree eight year old.
In fact, sitting next to dad Ryan and mum Julie in their Brookwood home, it would be hard to describe the family of four as anything other than perfect.
But behind Dillon’s absorbing smile hides a devastating illness that will soon shatter the dreams of himself and his family.
Last year, the Pirbright Primary School pupil was diagnosed with Duchenne muscular dystrophy (DMD), a genetic disorder that causes muscle degeneration not only in the arms and legs, but also to the heart and
respiratory muscles.[pullquote]Aggressive, muscle-wasting disease.[/pullquote]
Of the 70 strains of muscle-wasting diseases currently known to man, DMD is the most aggressive and, in two short years, Dillon will require the aid of a wheelchair.
More than 70,000 children and adults in the UK live with a form
of muscular dystrophy, with another 350,000 people indirectly affected as family, friends or carers.
There are no cures and many affected children don’t live to reach adulthood.
And there was more bad news for the shattered family as they discovered five-year-old Ella could also harbour the condition, meaning that any children she may have in the future run a huge risk of suffering in the same way as her brother.
Now, after coming to terms with the fact that their son has been denied a normal life, Ryan and Julie are desperately trying to raise awareness of the harrowing condition and generate funds for research that could help improve the quality of life, not only for Dillon but for each of the other 100 people born with Duchenne muscular
dystrophy in the UK each year.
Ryan, a physiotherapist, said: “We didn’t have a clue at the time that anything was out of the ordinary and if you look at him now you wouldn’t think anything was wrong with him.
“The hardest thing is looking at Dillon now, with him being such an active young lad, and knowing that in a couple of years he will be in a wheelchair and struggling to walk.
“You just don’t expect to have any kind of news like that – everything has changed. Everyone has dreams to watch their son grow up and live their From Front Page
life but all our plans have changed now.
“No one knows about his situation because it is such a rare condition.
Every time you tell someone that something is wrong with your son you’ve got to go through all the details and it can be quite distressing.
“If you go on to Google and search DMD it’s quite a horrific read and I’m dreading the day Dillon reads it.”
The family want to make the extra day count this year (February 29) and, working in tandem with the Muscular Dystrophy Campaign, are urging big-hearted Woking residents to dig deep and support their campaign.
Julie is in the process of setting up a sponsored sky dive with a whole host of family and friends, while Ryan is forging ahead with a charity dinner night and auction.
He added: “At the moment they are doing loads of research into a cure in London and Newcastle but only a few years ago they didn’t even know where the condition affected the genes.
“Scientists now know that a faulty code of DNA is to blame and they think that by bridging the gap in the genetic information, they will be able to find a cure.
“At the moment the future is looking a bit brighter but we want to push things forward and get the charity in the public eye. If people don’t know about it they won’t donate. If they aren’t familiar with the charity they will just walk past – and I’m as guilty of that as anyone.
“The Government aren’t spending a lot of money in the current climate and if not enough people knock on their door over muscular dystrophy, then funds could dry up.
“It won’t happen without us and, as parents, we need to get out there and work with these charities to help find the cure and, if it’s not in time for Dillon, it might be in time for the next generation.
“It’s an indiscrimitive condition that has been ruining lives for too long now – it has to stop.
The Muscular Dystrophy Campaign has been funding research into treatments and cures for more than 50 years.

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About the Author: Andy Fitzsimon