Hi everyone
Thanks for taking time to take a look at my web page.
I have been aware of DebRA for a few years, and the great work they have been doing in raising funds to provide help not only to the children that suffer from this aliment, but also give help and give reassurance to there parents.
I know most of you would pay good money to see me in pain, and this is a way you can !! In a drunken moment last summer i was cornered by Lawrence Dallaglio and a little grey haired Scotsman Greg Sim. The conversation went along the lines" mike can you ride?" I thought they were talking about things with motors and replied " yes of course" then came the punch line from Lawrence " good your doing the last leg" and that was it, off they walked. I went and bought a new crash helmet gloves boots etc looking forward to a nice cruse in the sun at some point. Then Greg informed me it was pedal power !!! Some how I decided to carry on, and found out I'm cycling from Rosslare to Edinburgh via Dublin some 549 km !!!
I hope you feel able to dig deep and give generously.
http://www.dallagliocycleslam.com/
listed below are a few more comments regarding DebRA
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.
Tie’s story
Tie was born on 2 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.
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