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County Gives Family Home After Reality Shun

Boy Suffers From Rare Skin Disease

POSTED: 1:56 pm EDT July 16, 2008
UPDATED: 2:26 pm EDT July 16, 2008

EJ Carfi suffers from a rare skin disease called epidermylosis bullosa.

“He's missing the protein in his gene makeup that holds your skin together,” said Jody Carfi, the mom of the 11-year-old. “So if you were to rub it or run into something it causes the skin to fall off, causes blisters that are very painful. You have to pop them with needles. And the sores become almost like a third-degree burn. That's how they feel, and its an ongoing fight to fight infection, to make sure he's getting the right kind of nutrition to take care of his wounds.”

His skin is so sensitive that even the slightest touch can cause these blisters and tears, she said.

“He has bandages on 95 percent of his skin,” she said. “They act as his skin and help to heal what's underneath there.”

Hoping to get a safe and comfortable environment for EJ, Jody said the Carfis applied for ABC’s "Extreme Makeover: Home Edition." She said they were passed up for another needy family in Connecticut.

But that's when the town of Ridgefield stepped in, she said.

Residents started a Web site devoted to raising money and donations, Jody said. After nine months of planning and 10 days of building, she said it was a dream come true for her family.

“It was absolutely amazing,” Jody said. “We had a committee of builders and community leaders and retailers here in Ridgefield. From there, everyone wanted to participate, from the schools to retailers all over Fairfield County.”

“I like this house because everything’s different,” EJ said. "It’s really kind of pretty because I have a flat screen TV and my own bathroom."

EJ said his new room is a fun place to hang out.

“This is the bandage room that we were in dire need of, and it's great,” Jody said. “It makes the bandaging for him a lot easier, and for me. You know, trying to keep it sterile, we have counters I can lay the stuff on, cut the stuff up on. You know, this is where he goes on a table. Before, we were on a fold-out table leaning over. This one goes up and down. The tub is unbelievable, because he comes in and out.

Before, she said they had to run up and down from the basement for EJ’s bandaging supplies. Now, she said, there’s a huge closet to store the supplies in.

The entire home is now wheelchair accessible as well, Jody said.

She said there’s even an indoor pool filled with salt water, which is good for healing EJ’s sores.

“We can't thank everybody enough … our friends, family, the whole town, surrounding towns, people we don't even know,” Jody said. “I mean, pulling together and making this project a reality; it’s just beautiful.”

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