Ten-year-old EJ Carfi suffers from Epidermolysis Bullosa, also known as the “butterfly skin disease.” The genetic disorder makes Carfi’s skin delicate like a butterfly’s – extremely sensitive and easily torn.
Upon hearing of the youngster’s condition from one of their teachers, students at P.S. 14 Sen. John Calandra School wanted to help him find relief.
“They felt bad for EJ so they really wanted to do something,” Throggs Neck resident and P.S. 14 parent Colleen Hill said.
A group of the students first talked about Carfi’s case during their Penny Harvest Roundtable discussion, led by the school’s physical education teacher Gloria Dio.
Through devoted efforts from the students, staff and concerned parents, a bake sale raised more than $700 for the boy.
“I think it’s very valuable to their world view,” teacher Jacqueline Flavin said. “Just to know they can make a difference in someone’s life, even at their young age.”
In a small ceremony at the school, the students read a poem to Carfi and presented him and his parents, Jody and George, with balloons and the check.
“He’s a wonderful little boy, smart and very upbeat too,” Hill said about her opportunity to meet Carfi. “He’s just a typical little boy, just a nice kid overall.”
Hill said the students were thrilled to be able to meet the boy they’d heard so much about. Many of them, she added, had even e-mailed him prior to the gathering.
Knowing that another family was recently selected over Carfi’s for ABC’s Extreme Makeover: Home Edition, students and community members alike are pulling out all the stops to help their cause.
The Carfi’s spend an average $50,000 a year for bandages and ointment, a cost which doesn’t include his nutritional supplements, adaptive equipment, countless surgeries or extensive medical attention.
Unfortunately, the family’s difficulties don’t end there.
As their bills continue to pile up, the Carfi’s have few, if any, funds to invest in the maintenance of their home – making it an additional obstacle in the little boy’s already challenging life.
For more information or to donate, contact AhouseforEJ@hotmail.com.
