My Story

Why DEBRA?

My son Peter was born with blisters on his fingers and diagnosed with Epidermolysis Bullosa Simplex at 6 weeks. As a result my father, aunt and I had a diagnosis as well and an explanation for our unusual skin and hair that no one had previously been able to explain.

DEBRA have provided support for us since diagnosis including funding the nurse who visited us at home the week after diagnosis so we didn't have to go to Great Ormond Street, meet ups so we could speak to other families and support with school access arrangements.

Peter and I work around our skin and blistering to ensure that we can do the activities we want to including Peter getting his Gold Duke of Edinburgh award and both of us enjoying parkruns and longer distances.

If I'm going to run one marathon it has to be for DEBRA, for giving me the confidence not to let EBS stop me doing what I want!