Marie Prince recently raised £250 by running the Dubai 10k in just over an hour.
Marie’s daughters Charlotte, five, and Cerys, four, and her husband Steve Rayner all live with mild Dominant Dystrophic EB.
The family have recently relocated to Dubai.
Marie said: “When we came here we were inspired and supported by the team at Great Ormond Street in our decision not to let EB define our lives or influence them more than strictly necessary. We have a fantastic GP and an amazing school nurse who treats minor injuries (daily) and changes dressings after swimming - exercising immaculate judgement on when she needs to call me in. We wish we were closer to GOSH, particularly at times of new problems, like when Cerys developed throat blisters in a country where codeine is a banned substance.
"It's harder to get your children to wear shoes, socks, tights or trousers when it's 40 degrees. Every day is a swimming day and I am the only mother who attends with a suitcase full of medical kit. The warm weather and lack of clothes highlight the physical issues the girls face. Unlike their school friends, they don't get to run around in swimming costumes and bare feet and their constantly dressed knees (protected by nattily dyed sock bandages) are always on show, provoking plenty of attention and questions.
From what I know of children with EB, they seem to be blessed with big personalities that shine out and say more about them than any medical condition ever could. We are delighted to support DebRA in any way that we can.”
