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Epidermolysis Bullosa (EB) is a rare genetic skin disorder that affects around 5,000 people in the UK. Those born with EB have skin so fragile that any trauma or friction to the skin can cause painful blisters or literally lift the skin away from the body sometimes leaving deep wounds that are likened to third degree burns. EB can also affect internal linings and organs. Certain types of EB can be fatal in infancy, whilst others are severely life-limiting.

There is currently no cure for EB.

Jamie who is three years old has Recessive Dystrophic EB which is one of the worst forms of EB. As well as deformity, he has a high chance of developing squamous cell carcinoma (aggressive skin cancer) before he reaches adulthood. He was born with no skin on his feet. Even now his feet are so fragile that they are permanently bandaged. His big toe and second toe on both feet have already fused together from the constant damage and scarring he's suffered. His other toes and his fingers will follow if left unprotected leaving mitten like hands and feet, a stump at the end of a limb. Every other day, he endures a bath and bandage change that takes between an hour to an hour and a half, depending on what is found underneath the bandages from knocks and tumbles that a normal child would get over in seconds. Any blisters that are found have to be pierced with a sterilised lance and drained to stop the blister spreading across the body. Sometimes when the blister is so big, it's quicker and less traumatic for him if we make cuts with sterilised scissors. There is a permanent supply of morphine for him that is used for when he is in so much pain, his little body starts shaking uncontrollably.

Jamie also suffers from corneal abrasions when the eyes are so hypersensitive to light, all curtains and blinds are closed for a day or so and he plays in the dark as if blind with eyes shut tight. On most mornings, his pillow is covered in blood stained saliva from internal bleeding, mostly from blood blisters in his mouth that have burst in the night, or from his esophagus where the lining is easily damaged. Sometimes he can just about mumble 'Mummy, I can't open my mouth' as the dried blood has sealed his lips together.

EB is horrific. Yet brave little Jamie is so resilient and cheeky with a great sense of humour. He once said, 'Mummy I have 'butterfly' skin so when I bump myself I get a blister and my skin comes off but it's ok because I'm a happy boy!' It's heartbreaking....

Please help raise money for the EB charity Debra so that the research can continue to finding a cure. EB sufferers and their carers need that little bit of hope that maybe their lives will be better one day. Maybe...

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