"They were just waiting for Debra to die"
Phyllis Hilton, Founder of the Charity DebRA
In 1963 Phyllis Hilton’s daughter, Debra, was born with EB. Today Phyllis can still recall what that period was like.
"She was in hospital for 10 weeks and it was clear that they were just waiting for her to die. They put her in a room on her own at the end of a corridor, they tried to feed her with an ordinary bottle and when she couldn’t suck because of the blisters in her mouth they simply wrote down ‘refused to eat’. In the end I walked in and told them I was taking her away, they couldn’t stop me but they did wash their hands of me."
The new mum made it up as she went along and Debra survived and gained weight, as Phyllis recalls: "I put her feet in potato bags and fed her with an eye dropper".
Looking back perhaps you can get a chilling glimpse of just how hard it must have been for Phyllis and others - the trauma, loneliness and isolation, not knowing or understanding. But this spurred Phyllis and those whose lives were similarly affected, to found a support group.
In 1978 the charity DebRA was formed.
Phyllis’s daughter Debra was an inspiration and kept her going. "On one occasion she insisted I take pictures of particularly bad areas of her skin so as to make it easier to explain about EB when I gave talks", she said.
And Phyllis obviously gets tremendous satisfaction from what has been achieved so far: "I always had the vision of an international association that could get things done for people with EB and now, when I hear of what might be achieved in the next few years, I feel my dreams are coming true."
Debra Hilton tragically died on 21st November 1980, just days after the first research funded by the fledgling charity DebRA commenced.
Her bravery and faith in the future is still reflected in all the people who live with EB and those associated with DebRA.
