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Walk-a-thon for the "Butterfly Kids"
Jonathan Gionfriddo is one of only twelve people in Connecticut known to have Epidermolysis Bullosa (EB). Children born with EB are called the Butterfly Kids, because their skin is as fragile as butterfly wings. Any friction, including the normal rubbing of clothing, induces painful blistering resembling serious burns, and causes the skin to come off; in severe EB, blisters form without any apparent friction at all. An EB patient can have as many as 100 blisters covering his or her body at any given time. Since Jonathan was born he has spent every day wrapped in gauze from his hands to his toes to protect his skin.
When Jonathan was a newborn, the bandages were replaced twice a day. Now that he is three years old (as of May 11), the bandaging is done twice a week. Jonathan's mom, Brenda, and his nurse, Canton resident Janis Clegg, replace each section of bandages as soon as they're removed, never leaving the skin exposed. The sensation of air on Jonathan's skin is painful and upsetting. Though Jonathan is fond of Janis, as soon as he sees her he knows what is in store. In April, Jonathan gave Janis a hug for the first time, a sign that he understands that she is there to help him and the pain he endures is necessary to treat his condition.
Anyone who's ever seen Jonathan and what he must endure would want to help him. You can help by supporting the first annual Connecticut EB Walk-a-thon on Saturday, June 8. Registration begins at 9 a.m. at the Mills Pond Recreation Park on East Hill Road in Canton, and the walk gets underway at 9:30 a.m. This 5-mile walk through Canton and Collinsville will help raise the public awareness about EB as well as funds for research and patient services. Half of the money raised will go directly to the Connecticut EB Support Group to help local families who suffer with the disease. The other half will be donated to DEBRA of America, the national organization dedicated to finding a cure for EB.
EB, which is not contagious and occurs in every racial and ethnic group throughout the world, causes external and internal problems. Blistering can occur from the mouth through the entire digestive system; it also affects the respiratory and genitourinary tracts. EB patients get their nourishment from a g-tube which is implanted in their abdomen. There is no specific treatment for EB; current therapy is directed toward the prevention of skin trauma, prevention of infection, and the treatment of complications. Some people with the worst form of the disease develop skin cancers which can lead to an early death.
If you would like to walk, call for a sponsor sign-up sheet; if you are unable to walk and you want to help, you can sponsor a walker for as little as $5. Volunteers on the day of the event are also needed, as well as donations of beverages and snacks for the walkers; for more info call Angie at 860-693-0644.
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