Lillington teenager continues to inspire
So it is fitting that Robin Hood, who has now dedicated his life to supporting the cause, is determined to raise £19,000 by running the London Marathon this year in memory of his late daughter, who was diagnosed with dystrophic epidermolysis bullosa (EB) shortly after she was born in 1989.
Mr Hood and Alex’s mother Virginia would spend ten hours a day wrapping bandages around their daughter, as the condition caused her to blister at the slightest touch.
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Hide AdBut it was being involved in a car crash in 1992 that was a turning point for Mr Hood. He said: “I was on my back for one year and felt totally depressed and demoralised. When I came back to full strength, I looked at my daughter and realised that health is the most important thing.
“I had lived a little bit of her life and it gave me a different perspective.”
Mr Hood volunteered as a full-time fundraiser for the Dystrophic Epidermolysis Bullosa Research Association (DEBRA) for the next six years. He is now head of the charity’s international fundraising operations and classes his home as ‘the road’ - having travelled to Malta, Canada and Portugal over the past few months - such is his passion for working for the cause.
Having started out by running a marathon in Scotland in 1994 while pushing five-year-old Alex in a pushchair for the whole route, Mr Hood has since taken part in hundreds of events - including the London Marathon in 2001, pulling his daughter along in a supermarket trolley, and a 50-mile event in Ireland, pulling along another little boy with EB in the same unusual fashion.
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Hide AdSo this year, in Alex’s memory and five years after she died, Mr Hood is once again taking on the London race, with a ten-year-old girl who has EB at his heels in a trolley, just like Alex 12 years ago.
He said: “Although a cure will obviously not benefit Alex, the researchers are now saying ‘when we find a cure’, whereas 19 years ago, there was no certainty that that would happen.
“Alex was on five different types of morphone every day of her life. But she was always an inspiration and I am very proud to say she was my daughter.”
To sponsor Mr Hood, visit www.justgiving.com/london-marathon-2013-robin-hood