AP Biology Class At NHS  Chips In For EJ

By Eliza Hallabeck

During the last days of school, 20 students in Susan McConnell’s AP Biology class are holding a Chocolate PediaSure Drive for EJ Carfi, an 11-year-old with a rare skin disorder called epidermolysis bullosa. Wounds from the disorder may cover up to 75 percent of the body, and force those with it to sustain on a diet of only liquids or soft foods because blistering and scarring occur in the mouth and esophagus.

According to Allie Clement, a student in the AP Biology class, Ms McConnell showed the students an article written in March in The Newtown Bee, and the students responded quickly.

“I just really wanted to get involved and help,” said Allie, a senior at the Newtown High School, “because this is a terrible situation. He is an 11-year-old boy and it is affected his entire family.”

According to Jordan Reed, another student in the AP Biology class who has been largely responsible with Allie for holding the drive together, epidermolysis bullosa, or “butterfly disease,” is an inherited disorder that causes the skin to form blisters and sores from any kind of trauma or rubbing. He said in an e-mail that there are approximately 12,500 patients living with it currently.

EJ is currently waiting for a new home to be constructed. A couple months ago the Carfi family was hoping to be on the television show Extreme Makeover, but they did not make it past the final round. Multiple other efforts have been started for the family in the area, including raising money for a new home to be built local residents in the Ridgefield area, where the family lives.

Jordan also said in an e-mail, “The resulting effects of the disease are such that the patient appears to have mild to severe burns all over his or her body. Due to the nature of the disease, these wounds remain open and must be covered continuously with bandages and ointments. In one year, EJ’s family will spend close to $50,000 on bandages and ointments alone. Unlike the other children, EJ cannot ride bikes, go swimming in the pool, or play any kind of regular sport since they all cause him to break out with new sores.”

Jordan said, by phone, the drive started last week, and it will continue until June 13. People who are interested in helping can drop Chocolate PediaSure off in the science classrooms at the high school or in the main office.