Local Families Are Hoping To Build A House For EJ

By John Voket

Two local families are pulling together to help a close friend in neighboring Ridgefield complete renovating and outfitting her home to accommodate her 10-year-old son who is suffering a long-term and terminal condition called EB or epidermolysis bullosa.

Those Newtown acquaintances, Melissa Carfi and Ellen Goyda, along with their families, are pitching in to renew efforts across western Connecticut to organize the funds and manpower after Jodi Carfi, her husband Tim, and her son EJ reportedly reached the qualifying stage to have the work performed as part of the television reality show, Extreme Makeover.

According to Ms Goyda, the Ridgefield family became one of two finalists for the show along with a project in Bridgeport, which eventually went on to receive the high profile makeover project and related television exposure. A call to the production company for that program did not immediately return a call for comment.

Ms Goyda said the entire process building up to the final stages of qualifying for the television makeover took a lot out of the working-class family, which also has a 4-year-old. She told The Newtown Bee recently that it has taken almost a year for the efforts to get back on track, but the energy among supporters of the Ridgefield family has regained traction as EJ’s condition continues to slowly deteriorate.

The friendship among the three women at the core of this initiative developed as they all worked side-by-side at a Fairfield County bank in 1992. As time went on, Ms Goyda and Melissa Carfi each got married and eventually moved to the same neighborhood in Newtown, while their friend Jodi remained in the Ridgefield area with her first husband.

According to Melissa Carfi, Jodi’s marriage ended after EJ was born, leaving her friend alone to handle the incredible responsibility of providing nearly constant care for her child, who has suffered with EB since birth. The situation brightened several years ago when Melissa Carfi introduced her single brother-in-law, George, to Jodi.

The couple fell in love and married soon after, with George adopting EJ, who took on the family name. Her friend and now sister-in-law Melissa said while having the added comfort and security of a husband made a monumental difference in the lives of both Jodi and EJ, the child’s slowly deteriorating medical condition continued to require more and more attention.

The EB Medical Research Foundation describes this condition as a group of diseases characterized by blister formation after minor trauma to the skin. This family of disorders, most of which are inherited, range in severity from mild to the severely disabling and life-threatening diseases of the skin.

This rare genetic disorder affects all ethnic and racial groups. Estimates indicate that as many as 100,000 Americans suffer from some form of EB.

Children who are affected suffer terribly with painful wounds similar to burns covering most of their bodies. Unlike burns, these wounds never go away. These children can never ride a bike, skate, or participate in sports because the normal play of children causes chronic sores.

Wounds may cover up to 75 percent of the body, and force these children to sustain on a diet of only liquids or soft foods because blistering and scarring occur in the mouth and esophagus. Scarring also causes the fingers and toes to fuse, leaving deformities that severely limit function.

“She’s had it rough,” said Melissa Carfi. “There are so many different types of the condition. Some kids with it are fine, they can do what others can do.”

She said as EJ has grown, he has developed a realization of the scope of his situation, but still longs to play and do the things his friends and relatives do. Melissa Carfi often has the family up to Newtown where EJ plays passive video games and sits by their pool watching his young cousins and their neighbors play.

Due to the scope of his wounds, EJ cannot use a normal swimming pool because of the chemicals. But a large-size tub that can accommodate his needs was part of the makeover plans.

Escalating Costs

Besides the daily heartache of dealing with the constant pain EJ endures, the costs for his medical care are escalating. None of the medical care and maintenance EJ requires is covered by insurance, and the family can rack up expenses of $50,000 or more each year just to cover bandages and soothing ointment for the child’s wounds.

Melissa Carfi said EJ’s mother has been his constant caregiver for more than a decade, learning the painful process of removing and reapplying bandages to his many wounds several times a day.

“Jodi became the only one who could do it her special way so that it minimized the pain for EJ,” Ms Carfi said. As the boy’s condition continues to slowly deteriorate, she said, he will soon be confined to a wheelchair.

Anticipating that eventuality precipitated the family’s attempt to qualify for the major renovations EJ will need to remain at home as part of the television show makeover. Tim Carfi said his brother George, EJ’s stepfather, is a capable carpenter, but has all but exhausted his ability to complete making the home wheelchair friendly in the limited time squeezed in between jobs as the family’s sole provider.

“The job is about halfway done, but it’s not just the work,” Tim Carfi said of his brother’s personal makeover efforts. “He has to take every job he can get to help pay the incredible expenses associated with EJ’s situation. There’s just no time left for him to fix up the house by himself.”

Melissa and Tim’s children, Austin, Zach, and Lukas, also want to pitch in and help as well. The older Carfi children are working to create a local program of donations of Chocolate Pediasure, one of the only foods EJ can consume due to the internal wounds.

The goal of Jodi and George’s Newtown friends is to raise enough money to cover all the building materials, labor, and medical supplies and related costs so EJ can live as comfortably as possible. Tax deductible donations can be made through The Ridgefield Fund – EJ’s House, c/o the Danbury Bank Corp, 94 Danbury Road, Ridgefield CT 06877, Attn Frank McPike.

Anyone considering offering other forms of assistance to the family or the makeover project can email AhouseforEJ@hotmail.com.