My Story

I have decided to take on the challenge of the London marathon for a charity which is close to my heart DEBRA. 

My daughter Penelope was born in 2017 and soon after diagnosed with a condition called DDEB Dominant Dystrophic Epidermolysis Bullosa.

EB is a rare genetic condition that makes skin so fragile that it can tear or blister at the slightest touch. Children born with it are often called Butrerfly children because their skin seems as fragile as a butterfly wing.

Whilst Penelope has a mild variation, there are some children who's life is limited by this cruel condition. 

The charity DEBRA came into our life when Birmingham children's hospital recommended we get in touch as support for Penelope's condition. DEBRA have been fantastic. They have provided support, well being, workshops and a whole host of information we would never have known without them. More so, we have met a community of other families who suffer with EB and can share our journey with them. 

DEBRA also provides fantastic opportunities to families such as annual events, low cost UK holidays and grants for equipment which is needed. 

I would like to give back to DEBRA for the support they have provided Penelope and my family for the past six years.

Please donate as little or as much as you can for this wonderful charity.

Thanks for reading,

Dave