Steven Wexler boarded a flight to San Francisco Tuesday for yet another adventure that, at one time, would have never seemed possible.
Melville’s Wexler, 22, is going on a summer group trip with Kids of Courage, a Hewlett-based nonprofit dedicated to helping children and families with severe medical disorders. Wexler has Riley-Day syndrome (also known as familial dysautonomia), a disease that impacts the autonomic nervous system, which is responsible for controlling a person’s hot, cold and pain sensations, as well as the body’s production of tears and control of blood pressure. The disease typically keeps victims isolated to their environment, prohibiting distant travel and strenuous activity. Wexler, though, doesn’t let the disease get in his way.
“I just think of it [the trip] as a way to feel independent and feel like a regular kid,” he said.
This is Wexler’s fourth trip, with previous adventures including Disney World and multiple trips to Los Angeles. He’s gone to rock concerts and ridden in a Lamborghini Diablo, activities he can enjoy thanks to the highly trained medical staff of physicians, paramedics and EMTs that accompany group members on the trips. This trip’s itinerary is largely a secret so that Wexler and other adventurers are surprised. He didn't know that his latest trip will include a Jelly Belly factory and a San Francisco Giants game.
Dr. Stuart Ditchek, a pediatrician with a Brooklyn practice, is Kids of Courage’s medical director, one of the physicians on the trip and Wexler’s personal physician. He and friends Howard Kafka, a paramedic, and Ari Adlerstein founded the organization in 2008 after a discussion on how bored chronically ill patients become being housebound throughout the year. Now they provide year-round programs catered to children and young adults who typically can’t leave home for strenuous activity.
“Our primary goal is really to establish that these kids don’t go a month of the year [without] something to look forward to,” Ditchek said. In addition to the summer adventure trips, Kids of Courage also treats patients to Super Bowl parties, boat rides and barbecues. This past winter Kids of Courage also took 45 patients to Westover Air Reserve Base in Chicopee, Mass., for a tour before going skiing at Mount Snow, Vt. Ditchek said all of the excursions, which cost between $5,000 and $6,000 per patient, are funded entirely by donations.
Kids of Courage means more than just adventure for people like Wexler, who has made hundreds of new friends that he keeps up with via Facebook and email. Wexler’s mother, Karen, said it all amounts to much more.
“I think the most important thing is that it [the trip] gives him a chance to do something that other kids take for granted,” she said. “He likes his independence.”
For more information, visit kidsoc.org.
Above: Melville's Steven Wexler, wearing the white T-shirt in the center, with a group of fellow adventurers in Los Angeles on a Kids of Courage trip.