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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.
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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Photographed by Gabe Palacio
Because infection is a constant danger, there are no beaches or baseball diamonds in EJ's summers. And at bedtime, when few 11-year-olds think twice about bounding up the stairs to their bedrooms, EJ toughs it out, painful step after painful step. "I'm happy when I get to my room," he says. "That's where I keep the ball the Yankees signed for me."
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Photographed by Gabe Palacio
When ABC's Extreme Makeover: Home Edition passed on the chance to help EJ last summer, family friend Allison Stockel picked up the cause. "Once you meet him," says Stockel, the executive director of the Ridgefield Playhouse, "you know you want to help. It takes his mother, Jody, two hours to bandage his body every day. And the wrapping alone costs the family $50,000 a year."
Here, Stockel stands with lead builder Mike Gulick and Margaret Price-Sims of Ridgefield Supply lumberyard as the house undergoes renovation.
Here, Stockel stands with lead builder Mike Gulick and Margaret Price-Sims of Ridgefield Supply lumberyard as the house undergoes renovation.
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Photographed by Gabe Palacio
Jody, a teacher's aide, and EJ's father, George, a carpenter, were amazed but not surprised when the entire town got behind their son. Everyone agreed that his bedroom and a wheelchair-accessible bathroom should be on the first floor, sparing EJ the steps upstairs. A separate "sterile room" to bandage him would also simplify Jody's daily routine.
Here, EJ sits at the new kitchen counter in his home.
Here, EJ sits at the new kitchen counter in his home.
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Photographed by Gabe Palacio
"At the top of my wish list was a small saltwater pool," Stockel says. "The water soothes his skin, and it's one of the few places where he can play with friends." The pool raised the price, of course, but Ridgefield came through.
Here, EJ sits by his new indoor salt-water pool.
Here, EJ sits by his new indoor salt-water pool.
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Photographed by Gabe Palacio
The Carfis moved to a hotel, and on May 27, 100 volunteers -- "store owners, neighbors, students, even people from nearby towns," says lead builder Mike Gulick -- converged at the Carfi home.
Pictured here ia an exterior views of EJ's house after the renovation.
Pictured here ia an exterior views of EJ's house after the renovation.
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Photographed by Gabe Palacio
A dozen people directed traffic as donated building supplies and breakfast for the contractors arrived. Just two weeks later, the renovation was complete. "Everybody's been so cool," says EJ. "The new house will make my life a lot easier."
Here, EJ stands in the doorway to his new bedroom, home to his beloved Yankee gear.
Here, EJ stands in the doorway to his new bedroom, home to his beloved Yankee gear.
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
There may now be a cure for this disease: http://www.startribune.com/lifestyle/health/19471139.html
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.
Its very sad for Extreme Home Makeover, because they passed an opportunity to help out such a sweet boy and his family. Shame on them! But on the other hand, things have a way of happening, and its very gratifying to see such a wonderful community come together and help this very deserving young man.
We all like it when Extreme Makeover does this type of thing. This is even more special because it wasn't done to gain viewers or to advertise a product or service. This was done from the heart. The people of Ridgefield, CT and surrounding communities have every reason to feel a great sense of pride. This type of behavior is what makes America great - Giving of oneself with nothing expected in return.
It's a wonderful thing that this community had the heart and resourses to help this family. I think everyone needs to keep in mind the shear number of pleas Extreme Makeover Home Edition gets. This family was lucky and their home was intact and beautiful (by the pictures) it just did not work fully for their needs. The majority of the homes done on the show are in need of complete demolition! They deserve praise for all they've done!
Respond with your own comments here. It is unfotunate that "Extreme Makeover" and ABC saw fit to reject the Carfi situation as a project. However, it is encouraging to realize that the show has stimulated a revival of concern for one's neighbors. Kudos to their community and those who live there...gwb, La Mesa, CA
Respond with your own comments here. It is unfotunate that "Extreme Makeover" and ABC saw fit to reject the Carfi situaion as a project. However, it is encouraging to realize that the show hsa stimulated a revival of concern for one's neighbors. Kudos to their community and those live there...gwb, La Mesa, CA