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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 is a brave five year old who attends school with the assistance of a one-to-one TA. But Jamie suffers from Recessive Dystrophic Epidermolysis Bullosa (RDEB) - one of the worst forms of EB! He was born with no skin on his feet, and even now his feet are permanently bandaged as the skin is so fragile. Despite this bandaging, Jamie frequently needs to use a wheelchair as it is too painful for him to walk. His big toe and second toe on both feet have already fused together from the constant damage and scarring he's suffered. Other toes and his fingers will follow if left unprotected leaving him with mitten like hands and feet. Every other day he endures a bath and bandage change that can take over an hour depending on what skin loss and blisters are found underneath his bandages from knocks and tumbles that normal children get over in seconds. Each morning before school and throughout the day he is checked for blisters that have occurred and any that are found have to be lanced with sterile needles to prevent them spreading across the body. There is a permanent supply of morphine for him that is used when he is in so much pain his little body shakes 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 two and he plays in the dark as if blind with eyes shut tight. He frequently gets blisters in his mouth so his food must be soft or mashed up to minimise the damage to his mouth and oesophagus. Despite this he has already needed his first operation to widen his oesophageal tract due to the build up of scar tissue!

EB is horrific, yet Jamie is so resilient and cheeky with a great sense of humour. But now he has begun asking, ”Why have I got butterfly skin? Will it go away?”. How do we answer him...?!

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

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