Young Luke O’Hanlon loves Lego, exploring and playing outside. He also does a gratitude list every night before he goes to sleep.
But the 10-year-old Coalisland boy has a lot more to contend with than other children his age.
Luke has Duchenne Muscular Dystrophy (DMD), a progressive, degenerative muscle condition which affects his movement and balance but doesn’t stop him enjoying life.
In fact, his mum Claire makes a point of concentrating on the positives while, at the same time, raising awareness of this devastating disease.
She and her husband Aidan run a fundraising group, Leap for Luke , which was set up in 2012 to educate people about the condition and raise funds.
Tuesday, May 25, was the ninth anniversary of Luke’s diagnosis, and is always a poignant time for the family.
Claire marked the date with a post on the group’s Facebook page: “Since I was younger I’ve known that my mum’s worst fear for me was that I would have to follow in her footsteps… watching my son’s body slowly waste away until his lungs and/or heart can no longer sustain life.
“But the love and joy that this little boy brings to the world is so much stronger than any heartache Duchenne could ever bring.
“Today, as with all our diagnosis anniversaries, we focus on the good that fills our lives and while we can’t help but notice how Duchenne is taking hold of Luke’s little body, we also can’t fail to notice his indomitable spirit which grows in strength every single day.”
Claire’s brother Mark sadly died of Duchenne at the age of 16 and three of her uncles also lost their lives to it, aged 16, 17 and 19.
Since 2012, Leap for Luke has raised £110,000 for two charities – Muscular Dystrophy UK and Action Duchenne – through a series of fundraising events.
Last summer, Claire and Aidan, along with Luke and younger brother Coen (7), did a three peaks challenge up Slieve Donard, Divis Mountain and Cuilcagh Boardwalk, with Luke being carried for part of the routes.
They raised more than £3,000 for Muscular Dystrophy UK, a charity of which Claire is a trustee. She is also chairperson of the charity’s NI Council, and lobbies and advocates for more research and funding.
Luke, a P6 pupil at St John’s Primary School in Kingsisland, has recently started a new 144-week drugs trial to slow the progression of the disease, having taken part in a successful previous one.
“For a 10-year-old with Duchenne, he’s doing amazingly. He’s a little superstar,” said Claire. “We were out at Gosford Forest Park the other day and he walked around and didn’t go in the wheelchair once. But steps are so hard for him and he needs help to get up off the floor.
“Duchenne has brought a lot of positive things into our lives as well, in terms of the people we have met, the fundraising and advocacy we do, and the things we have got to experience. Obviously we wish this hadn’t happened, but this is the way it is.
“Now there is a pipeline full of potential gene therapies. Gene therapy is going to be a lifesaver, if not for this generation, then the next one.”
Claire, meanwhile, is hoping more companies will get involved in supporting the charity and possibly make Muscular Dystrophy UK their company of the year.