9-year-old Dominic was diagnosed with Duchenne Muscular Dystrophy (DMD) just before his third birthday. DMD is a genetic muscle weakening and wasting condition that mostly affects boys and has no known cure. The condition continues to decline throughout childhood and will eventually leave Dom wheelchair-bound.
Discovering your child has a life-limiting condition which is only going to get worse is incredibly difficult to come to terms with as Dom’s dad, Paul, explains:
“The first year after the diagnosis was particularly tough because you’re dealing with the information that the ultimate ending of your child’s life is very early death. As parents you go into a stage of mourning and grieve something that hasn’t happened – the passing of someone who actually is still there.
“It was very lonely and isolating because our situation isn’t something that everyone has to deal with and no one really understands how you feel or has answers that are going to make it any easier for you. Unfortunately all the stages of Dom’s illness are negatives because you are managing decline. It’s an incurable condition, there is no treatment and the only thing to do is just manage it. ”
After such devastating news, Paul began looking for ways to cope with the realities of Dom’s condition and found solace in running.
“I think anyone who’s been given news like that tends to do things to take their mind off it – especially men. I started running to take my mind off things and process what was going on, and started doing longer and longer distances. I eventually did a marathon to raise money but it was actually a sort of therapy.
“My wife, Fleur, and I eventually began to dig a bit deeper to find the positives and started thinking about all the amazing things that Dom can achieve. Yes, he has a life that none of us would have chosen but there is no reason it can’t be a fulfilling one. In his 14 or 20 years he can achieve more than someone 75-years-old. For me and Dominic, it’s all about getting out and doing things and saying ‘Yes’.”
After Paul’s marathon he looked for a different challenge, and a way to spend more time with his son. He discovered Rick and Dick Hoyt, a father and son team who race together. Dick Hoyt pushes his son Rick, who has cerebral palsy, in a racing wheelchair and they’ve competed in over 1,000 events together since the 1970s.
“I wanted to be able to do more things with Dominic, especially when he was starting to realise he is different from other children. Rick is amazingly articulate and brilliantly academic, but physically disabled. When I read about them I thought that kind of feels like something Dom and I could do.
“We can’t go for long walks and bike rides like other fathers and sons so we bought a special needs buggy and started running with the racing wheelchair instead. We spend Sunday mornings running through Richmond and Bushy Park and it’s our way of spending time together. Dominic loves it because it gives him a feeling of independence.”
Paul and Dom have been racing for three years together and have successfully run over 25 organised events – including one ultra marathon, one marathon and 12 half marathons.
“It sounds odd but it is a partnership. And he‘s the heart and soul behind the partnership, I’m just the legs really. He’s a competitor and he wants to win, like any 9-year-old boy. His frustration with me is that I’m not the fastest in the race so he really, really pushes me and withholds nutrition and liquid from me if I am not running hard enough! Pushing the buggy takes about 20% more effort than running but that’s part of the challenge and I wouldn’t change it – it’s our time together.
“This year we’ve got the Yorkshire marathon lined up, which we signed up to partly because of Dom’s love of Yorkshire puddings. He found out York is in Yorkshire where they make them so the plan is to run a marathon then eat Yorkshire puddings in some way shape or form!”
The father and son team have raised almost £10,000 for Shooting Star Children’s Hospices, a source of care and support for Paul’s family throughout their journey.
“We’re involved in a fight without a happy ending but the amazing people at Shooting Star Children’s Hospices have helped us cope and thrive as a family right since Dom’s diagnosis nearly six years ago. Dom’s sister, Rowan, regularly uses the sibling support groups, we’ve benefitted from Hospice at Home support and short breaks, and have met other parents at the hospice who have become really close friends and will be for life.
“The most important thing we do is use the hydrotherapy pool at Shooting Star House in Hampton every week. Dom loves to swim and is so happy in water. Boys with DMD lack muscle power and the ability to move very well physically on land but they’re buoyed in water. The pool also loosens Dom’s muscles and most importantly he feels in control – it’s been a godsend.
“The charity provide such a vital service not just for children, but the whole family, and because of them we’ve all been able to get on with life and smile regardless of whatever obstacles get in the way.”
Shooting Star Children’s Hospices relies on donations to provide the care that young people with life-limiting conditions need, please help us continue by donating to us today – click here to donate.