Citizen of the Week: Overcoming Obstacles

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No tubes, medications or pumps are going to stop Steven Wexler of Melville from having the trip of a lifetime.

Wexler, 21, was born with familial dysautonomia, an illness that effects the body’s nervous system. He cannot feel pain or hot and cold, has difficulty regulating his blood pressure and is unable to produce his own tears. On a typical day, Wexler takes between 10 and 15 different medications. His digestive muscles don’t work well, so he must use a feeding tube to drink any liquids. Despite his daily difficulties, Wexler is about to embark on a cross-country trip to see San Francisco for the first time.

The trip is made possible through a not-for-profit organization called Kids of Courage. The organization hosts the largest medically-supervised adventure travel program in the United States. It will take 150 chronically ill children on the week-long trip to California. The plane is equipped with oxygen concentrators, feeding pumps, suction machines, monitoring equipment, a multitude of medications and full resucitation equipment including drug bags, intubation kits and defibrillators. The organizers describe it as a “hospital in the air,” with three medical volunteers assigned to each camper.

For Wexler, it’s a chance to meet other young people and make friends with kids and young adults from all over the country. It also gives him the opportunity to have a normal summer vacation.

“I like the fact that they bring kids with disabilities together and make it possible to travel to places they’ve never been. I’m really looking forward to it. I can’t wait,”  he said.

During the trip, which begins Aug. 16, he will visit Six Flags Great Adventure, spend a day at California’s largest water park, take a tour of the Jelly Belly candy factory, visit the Golden Gate Bridge and see the NASA Center. Wexler is especially looking forward to visiting Alcatraz. As an avid sports fan, is hoping to catch a baseball game too.

For others who have disabilities, Wexler offers some words of encouragement.

“Try to be brave and do the best you can. Keep going. It’s about trying. Never say I can’t,” he said.

His mother, Karen, is also excited for him to take the trip because she said it gives him a sense of “normalcy.”

“It’s a great opportunity for him. He has nursing care eight hours a day so he doesn’t have a lot of independence,” she said. “To get on an airplane, travel the country and have fun is really something.”

Wexler has been on a few Kids of Courage trips before, including a vacation to Los Angeles and Disneyland, which Karen said have been great experiences for him.

“He just comes back so rejuvinated and excited - so full of life,” she said.

Living with a chronic illness, Wexler has good days and bad days. Despite his challenges however, he his determined to get the most out of life.

“He’s a tough kid,” his mother said. “Other people might give up, but he’s a fighter.”

For more information about Kids of Courage, visit www.kidsoc.org.