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.
Discovering your child has a life-limiting condition which is only going to get worse is incredibly difficult to come to terms with as Dominic’s dad, Paul, explains: “The first year after the diagnosis was particularly tough.
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. “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. It’s our way of spending time together and Dominic loves it because it gives him a feeling of independence.”
Paul and Dominic have successfully run over 25 organised events – including one ultra marathon, one marathon and 12 half marathons.
The father and son team have raised almost £10,000 for Shooting Star Chase, 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 Chase have helped us cope and thrive as a family right since Dominic’s diagnosis.
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 every week. 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.”