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My brave little friend Isla, daughter of my friends Rachael and Andy Grist, was born with Epidermolysis Bullosa. Isla is a wonderful girl with a ready smile and loving personality, but that smile belies the constant pain she suffers. EB is a group of genetic disorders that result in fragility of the skin and, in Isla’s case, other internal membranes and organs. Blisters, open wounds and sores form as a result of the slightest touch, rub or trauma. The condition is sometimes described as like having ‘skin like a butterfly’s wing’.

Like many other children, Isla likes to play and have fun, however, she blisters at the slightest knock and her fragile skin comes away very easily.  Family and friends even have to be careful when hugging Isla as even this could hurt her.  She also gets blisters in her mouth and throat, which makes eating and drinking very painful.Isla’s blisters need to be constantly lanced and treated to minimise infection, which is an lengthy and painful process. 

Her parents bath and change her bandages twice a week, but this is extremely distressing for her.  The right balance of pain relief is vital and includes morphine and a powerful sedative, which induces amnesia.  This also helps Isla not to associate pain with her parents. Isla’s feet have never healed and remain constantly bandaged and she finds walking extremely painful.

DEBRA is the national charity working on behalf of people in the UK with EB.  DEBRA not only fund research into the causes and treatment of this debilitating condition, but also provide support to the families of those affected.

I have wanted to do something to raise money for DEBRA since Isla was born and decided this year to take part in the Thames Path Challenge. In this challenge I will attempt to walk 100k (approx. 60 miles) in 24 hours (hopefully less). The route follows the Thames Path West from Putney and the challenge is not only about completing the distance but also dealing with the sleep deprivation it involves.

Just £25 can fund one hour of research to get closer to finding a treatment for EB. Please give whatever you feel you can, however small, to help me support DEBRA to find a treatment for Isla.

 

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

So please dig deep and donate now.