At 6am next Saturday I’ll be setting off to run the 100 mile (160km) length of the South Downs, across the south of England from Winchester to Eastbourne. This will be 24 hours of continuous, off-road, mountainous, muddy, drawn-out, suffering... and that’s if it goes well.

As the sun sets on Saturday, with two marathons in my legs and the better part of two more still to go, it will be thoughts of my little cousin Charlie that keep me going.

When he was born, something wasn't right with his skin. It was very fragile and blistered and broke at the slightest touch: from the clothes he wore or the gentlest touch from his parents. They wanted so badly to hold him and comfort him, but couldn’t without leaving open wounds. Treatment for children with Charlie’s condition, Epidermlysis Bullosa (EB), is very limited. It consists mainly of symptomatic relief: heavy doses of painkillers to control the agony; changing bandages frequently; and trying to protect their poor delicate skin. Charlie outlived his life expectancy. He passed away at a little over five months old.

 

There are so many good causes for us to support and calls on our generosity, but I hope by doing something out of the ordinary I can raise as much as possible to help other children like Charlie and their loved ones. For this reason I will be running the best part of 4 marathons non-stop, through the night, for DEBRA.  They support children with EB and are dedicated to conducting research into the condition (see www.debra.or.uk for more inspiring stories).

Thank you in advance for any support you feel you can give. There are over 5000 people with EB in the UK alone, but if my efforts can do anything to relieve the suffering of even one child, or avert one more set of grieving parents, they'll be worth it many times over.