After his daughter developed the same condition that plagued him in childhood, Tim Jackson is taking on a tough challenge to raise money for DEBRA.
Tim, who lives in Loddiswell, was diagnosed with Epidermolysis Bullosa, known as EB, when he was a child, and his daughter Bea has just been diagnosed with the same condition.
He is raising money for DEBRA, a charity launched in 1978 by Phyllis Hilton whose daughter Debra had EB and which became the world’s first EB patient support group, by running the length of nearly two marathons, 50 miles across Dartmoor in September.
EB is an inherited connective tissue disease that causes the skin to blister and not heal as well as it should. Jonny Kennedy, the subject of the heartbreaking documentary ‘The Boy Whose Skin Fell Off’ which aired on Channel 4 in 2005, suffered from an extreme version of the condition.
“What gets me is that with severe cases, you can’t cuddle the children”, said Tim when he was explaining why he decided to take on the challenge. “Its very painful and debilitating in extreme cases, but can you imagine seeing your child in that much pain and not being able to cuddle them?”
Children with EB are called ’butterfly children’ – their skin is as fragile as the wing of a butterfly, and their skin can blister and tear at the slightest touch.
Luckily, both Tim and Bea have mild symptoms of the condition. “I’ve had it all my life”, explained Tim, “and Bea didn’t have any symptoms until she was around 15 months old. Once she started walking, and falling and knocking her knees, we noticed.
“We went to Great Ormond Street Hospital for her to be diagnosed, and it brought back all the memories for me from when I was young. You don’t grow out of it, but you learn to protect susceptible areas, like ankles and knees.”
Tim is running 50 miles, with elevations of 3,100m, across Dartmoor on Saturday, September 2, running on surfaces from roads to stoney river banks, open moorland and tracks.
“I’m starting with four miles on the road, then 15 miles next to a river, then a bit of road before I cross open moorland with bogs and tussocks, and then the final stretch is on a stoney track, so there’s a bit of everything”, explained Tim.
“The hills will be hard, almost anyone can run downhill, but I wanted it to be hard. I cycle a lot, and I took up running because it was dangerous to cycle around here in the winter, and I wanted to do something difficult.
“The kids with EB find walking difficult, so its the opposite of what they can do, and running 50 miles is going to be hard.”
You can support Tim and donate to DEBRA on his JustGiving page: www.justgiving.com/fundraising/timmyjackson, and you can find out more about DEBRA and the work they do on their website: www.debra.org.uk