Mark Creswick’s life changed when his son was diagnosed with a rare muscle-wasting condition.
He has spent the past year raising awareness and funds to promote pioneering research into Duchenne muscular dystrophy, which afflicts Harley, who is six next month.
Mark has established Harley’s Fight Foundation, organised funding events, spoken out on TV and radio and been to Parliament twice to brief members of the Commons and Lords.
Now his efforts have resulted in him being named Campaigner of the Year by The Muscular Dystrophy Campaign in recognition of his “courage and resolve to talk about difficult, personal issues facing his family and others like them”.
Presenting him with the award, president and sports personality Sue Barker said he was an inspiration to the charity and its supporters.
“It was a privilege,” said Mark, aged 36, of High Green, who has combined his campaigning with a job with a nutrition company. “I was doing everything I could to raise awareness of Duchenne muscular dystrophy for Harley and for other people with it. It was nice to be honoured for the work over the year.”
The condition causes muscles to weaken and waste over time, leading to increasing and severe disability.
Harley was diagnosed two years ago. “We knew there was something wrong. He wasn’t able to climb the stairs and he kept falling over. But it took us nearly 18 months to push the doctors and to get the blood test and the diagnosis.
“It’s a life changing thing when you are told your son has got a disability that is going to break him down.”
There is no cure, and most people die by their mid-20s.
But Mark said: “There’s a lot of research out there and the hope is that it gets through clinical trials and shows people don’t have to die in their teens and 20s, and that they can live comfortably into theirs 30s, 40s, 50, 60s ...”
He has been encouraged by work at the University of Sheffield and, in particular, by neuromuscular scientist Prof Steve Winder, who will speak tonight (Thursday) at a ball Mark has organised with The Muscular Dystrophy Campaign at Baldwin’s Omega, Brincliffe Edge.
Harley, who goes to Coit Primary at Chapeltown, occasionally uses a wheelchair and is likely to be in an electric wheelchair by the age of ten.
“He has his good and bad days,” says Mark, married to Dawn and with a daughter, Freya, three. “People can see he is slowing down if they haven’t seen him for a few weeks.