HAVING suffered illness most of her life, Kelly Magee accepts her fate with pluck and determination.
But the latest diagnosis has sent her into battle – because it’s not for her but her son William.
“I’m going to fight to save his life and that of others like him,” vows Kelly.
William was diagnosed with Duchenne muscular dystrophy on September 4, just two weeks after his second birthday.
Over time his muscles will degenerate leaving him wheelchair bound and limiting his life expectancy.
But it’s not just this news that has shocked Kelly into action.
It is the discovery that, because so few people suffer from the condition, there is no government funding into research to find a cure.
“And that’s what I want to change,” says Kelly, 31, from Oxton, Wirral.
“The research is coming on in leaps and bounds and extra funding would really make a difference.
“I want to raise awareness of this and, with the help of a petition, persuade the government to think again.”
Former sales rep Kelly’s family means the world to her, not least because at 14 she was told she would never have children.
The bowel condition Crohns affects her digestive system and leaves her vitamin deficient.
So when she and husband Mike found she was pregnant with Elizabeth, now eight, they were thrilled.
Kelly’s condition worsened after childbirth and she underwent surgery to remove part of her bowel.
Nevertheless they decided to try for another baby.
“We got caught first time. And when I found out it was a boy, everything was so complete.
“William is such a gorgeous child.
“The pregnancy wasn’t without its complications and I had to be induced so I didn’t get too big and put pressure on my bowel, but when I held him everything was perfect.”
William was allergic to dairy products, but so too was Elizabeth. But then problems started to stack up.
He didn’t thrive and Kelly noticed that when he was trying to stand up and walk “it was like his mind was telling him to do it but his legs couldn’t”.
When she first took him to a paediatrician William was 19 months old and still not walking.
The couple ended up at Alder Hey where it was confirmed their little boy had Duchenne muscular dystrophy.
“My thoughts were totally irrational; at first I thought they were lying to me,” admits Kelly. “And because it’s a genetic condition from the mother’s side I felt guilty.”
Duchenne muscular dystrophy affects mainly boys and many, says Kelly, will die before they are 20. They become wheelchair dependent around 10-12 years of age and require spinal surgery in their teens. Breathing and feeding problems follow.
“The specialist says we are lucky that William is showing no signs of learning difficulty, though sometimes I wonder if it’s better not knowing.
“I just have to hope that there is going to be a cure.”
And if she has anything to do with it – there will.
“There are 70,000 people in the UK with muscular dystrophy so the government argues funding research is not financially viable. Yet there are 120,000 people with AIDS and that’s hugely funded.
“We give billions to children abroad but what about those at home? I want everyone to have equal consideration.
“They will give us wheelchairs or extensions to our houses, but that’s not what I want. I would rather have to carry William and have them put money into research to find a cure.”
Work is already well ahead thanks to donations with hope of a treatment to stall the progression of the condition and then, hopefully, a cure.
But with government funding, much more could be achieved.
Kelly has already taken part in a 22 mile walk and has organised a charity auction on December 1 at Leasowe Castle Hotel, to raise more money and awareness.
She is trying to get a celebrity to help support the campaign for more research and someone to attend the auction: “I would love to get Daniel Craig – though my husband jokes that’s just for me!”
Meanwhile Kelly is encouraging people to sign an online petition.
“Whatever happens I will make sure both my children have the best life they can.
“I’ll make sure, with Mike, that his life is as wonderful as it can be. And I will do everything I can to try to save it too.”
To sign the petition for ‘Funding for research into Duchenne Muscular Dystrophy’ log onto www.epetitions.direct.gov.uk To contact Kelly call her on 07724742488.
By Janet Tansley