This article was printed in Reader’s Digest
Best of America: A Sick Boy's Dream Home
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.
By Fran Lostys, Photography 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.
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."
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.
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."
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.
Stockel stands with lead builder Mike Gulick and Margaret Price-Sims
of Ridgefield Supply lumberyard as the house undergoes renovation.
"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 at the new kitchen counter in his home.
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.
Here, EJ sits by his new indoor salt-water pool.
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."
Pictured here ia an exterior view of EJ's house after the renovation.
Here, EJ stands in the doorway to his new bedroom, home to
his beloved Yankee gear.
A Home For EJ
November 2007
Dear Friend,
During this time of giving thanks and enjoying our family and friends, please take a moment and ponder what it would be like if you couldn’t enjoy all of the things that we take for granted. What if walking up a flight of steps brought you unbearable pain. What if playing catch with your friends was just not possible because the ball would damage your skin too severely and just cause too much pain. What if eating, sitting, even bathing was a painful prospect on a daily basis. That’s how it is for someone with “Butterfly Disease” and that’s exactly what EJ Carfi has to endure every single day.
Quite honestly, there’s not much we can do for EJ, except make his life a more comfortable place to exist. A group of concerned citizens have gotten together to help re-model EJ’s house so that it is more conducive to his needs. But this takes money. We are trying to raise a total of $650,000 so that EJ can live out the remainder of his life in comfort. This money will go towards a lift to get him up the stairs to his bedroom, a salt water pool to ease the pain of his damaged skin, a sterile environment to store and change his bandages that go over his entire body, and many other things- like a special computer for his webbed hands, ongoing medical attention and much much more.
We ask that you send something; there are approximately 10,000 households in Ridgefield, if every household were to send $65 we would reach our goal with this one drive. We know that there are so many causes to support and we appreciate anything you can do to help us help EJ.
Have a wonderful and blessed holiday season.
With Gratitude,
The Home for EJ committee:
David Adams, Billy Craig, John Doyle, Ellen Goyda, Michael Gulick, Neal Hicks, Charlie Knoche, Paul McNamara, Frank McPike, Joe Mulvaney, Tom Reynolds, MaryAnn Simonelli, Margaret Price Sims, Allison Stockel, Joe Yursik