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 that would not be able to afford or have the means to acquire help locally. It seems that in this case the town itself did have the capability to help this family. And Makeover could better help a family in a less financially advantaged town. Carmen

By carmabelle, on 07/23/2008

There may now be a cure for this disease: http://www.startribune.com/lifestyle/health/19471139.html

By Banaticus, on 07/22/2008

I think this is what Extreme Makeover Home Edition is all about. Getting communities to help their own needy people. Wasn't the builder for this project also the builder on the Bridgeport, CT project that ABC did do a makeover for? He must be a very generous man along with all the others that rebuilt EJ's home. God bless them all and perhaps other communities across the country will also be inspired by the show to do what they can for people in need.

By margiemahoney, on 07/21/2008

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