Best of America: A Sick Boy's Dream Home

By Fran Lostys
Afflicted with a rare disease, this 11-year-old boy needed a major home makeover to have access to his bedroom and bathroom. His community came together to make his dreams a reality.
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Butterfly Disease Affects Family
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Photographed by Gabe Palacio

Most sixth graders in Ridgefield, Connecticut, spend their vacation swimming at Great Pond or playing ball. But EJ Carfi spends his days playing video and board games at a local camp, his nights watching the New York Yankees on TV. EJ suffers from recessive dystrophic epidermolysis bullosa (EB), the so-called butterfly disease, which causes his skin to flake and blister at the merest touch.

Pictured at home are EJ Carfi, his sister Carina, and his parents, Jody and George. The bathroom is in the hallway and the steps lead to his bedroom, both inaccessible to the wheelchair he uses to get around.

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Ridgefield is a very well to do, upscale income town, and usually Extreme Makeover goes to families thatBy carmabelle, on 07/23/2008

There may now be a cure for this disease: http://www.startribune.com/lifestyle/health/19471139.htmlBy Banaticus, on 07/22/2008

I think this is what Extreme Makeover Home Edition is all about. Getting communities to help their ownBy margiemahoney, on 07/21/2008

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