Story
Thanks for taking the time to visit my JustGiving page. I was invited to a DEBRA charity boxing evening in London by a good customer of mine, Vince Scudder. After learning more about this terrible skin condition and seeing some of the poor children it affects I felt I had to try and help out. Lawrence Dallagio did a speech at this event about his month long Charity bike ride visiting every Rugby ground in the 6 Nations tournament next February; starting in Rome and finishing in Scotland. He said he had 2 spaces left on the DEBRA team for the Paris to London Stage, so I put my name down and thankfully got excepted. I now need to get in training and raise some money. So Please donate as much as you can. Below are some facts on the EB Condition. Please also see the photos and video of the poor children on this homepage.
Thanks For your support!!!
EB is a currently incurable genetic skin condition. In its most severe forms, EB is fatal in infancy and can cause fatal skin cancer in young adults, However, in its mildest forms it can cause lifelong disability and pain. EB causes a breakdown in the natural proteins that hold the skin and internal membranes, causing blistering and sores at the slightest touch or even spontaneously. To prevent infection and even more damage blisters have to be lanced and dressed every day a painful procedure, taking up to 3 hours. Excessive blistering creates scar tissue which can cause toes and fingers to fuse together. Scar tissue can also cause the oesophagus to narrow, making eating difficult. Eventually that scarring can lead to an aggressive form of cancer.
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Tie’s story
Tie was born on 2nd September 2006 with severe Recessive Dystrophic Epidermolysis Bullosa (EB). His skin can’t stick together. He blisters at the slightest knock and his clothes rub constantly. When Tie is tired and rubs his eyes, he causes additional wounds on his face. Rolling around his bed gives him blisters across his entire body. After drinking he gets blisters in his mouth, down his throat and in his internal lining. When this happens, he struggles to eat or drink. His blisters need to be constantly lanced by a needle then dressed to keep infection at bay. Tie's parents hope that one day it will be safe for them to give Tie a hug without worrying about the damage they could do to his fragile body.