By Alesha Williams Boyd, USA TODAY
Updated 8/16/2011 6:49 PM
By Tanya Breen, Asbury Park Press
NEWARK — Last week, Ezra Kress was released from a New York hospital after a sudden 105-degree fever. You wouldn’t have known it Tuesday at Newark Liberty International Airport.
A pair of wire-rimmed glasses perched on his nose, Ezra was all smiles, jokes and laughs. No wonder: The 13-year-old was waiting to board a cross-country flight to San Francisco. He’ll visit Six Flags Discovery Kingdom, catch an Oakland Athletics baseball game and tour Alcatraz before the week is out.
For Ezra of Highland Park, N.J., a trip such as this is a major undertaking: He has familial dysautonomia, a genetic disease of the nervous system. The condition hampers his mobility, slurs his speech and can cause sudden fevers like the one he had last week. He needs a wheelchair, feeding tubes and, at night, an oxygen concentrator.
“We couldn’t do this as an individual family as easily because of all the medical issues,” says his mom, Adena Lebeau, 42.
That’s where Kids of Courage steps in. The New York-based non-profit is making the adventure possible for Ezra and about 150 other children who have chronic illnesses. The organization raises funds and provides medically supervised trips for sick and challenged children throughout the year. The San Francisco trip is their largest-scale event.
Shimon Golshevsky, 9, plays on an airport transport as he waits for his flight with Yehuda Schwartz at Newark Liberty International Airport on Tuesday.
Young people on the trip, from 12 states, England, Canada and Israel, have conditions ranging from cancer to cerebral palsy, says Kids of Courage co-founder Howie Kafka of Lawrence, N.Y. Some have had limbs amputated because of their illnesses; others are paralyzed, he says.
“The sickest of the sick, that’s who we want to take,” says Kafka, a paramedic. “We give them a dream.”
The trip is no small endeavor: About 400 people embarked Tuesday on the five-hour, 30-minute flight, including roughly 200 counselors assigned to accompany the kids and a medical team of 17 physicians, nurses and paramedics, all volunteers.
Raphael Greenfield, 14, waits for his carry-on bags to be searched with his counselor, Mark Rapp at Newark on Tuesday.
Their luggage included about 30 wheelchairs totaling 2,000 pounds. Volunteers will administer more than 1,000 doses of medication a day. That’s more than the average at some children’s hospitals, according to Kids of Courage.
The price tag on the trip: More than $830,000, from private donations and corporate sponsors, says Stuart Ditchek, a New York pediatrician and Kids of Courage co-founder. The excursion must be planned seven to nine months in advance, he says.
“These young folks spend so much of their time being sick that they don’t have friends they can just call and hang out with,” Ditchek says. “A lot of them, because of their challenges, were spending a good number of months a year not doing anything. We saw a need there, for these kids to have something to look forward to.”
Another part of the trip many of the kids look forward to: Their parents won’t be coming along, Ditchek says. He said that helps encourage independence among the youngsters.
“We’re not invited,” jokes Aaron Pruzansky, 39, of Lakewood before sending his daughter, 11-year-old Chaya, on her way. Chaya has cerebral palsy.
Sarah Solomon, 23, of North Miami, Fla., laughed in her wheelchair and accepted hugs from counselors at the airport Tuesday. She has mucopolysaccharidosis, a painful disease that prevents her from producing enzymes needed for growth. She says she stopped growing when she was 3 years old.
“Sometimes I can’t get out of bed,” she says. “This trip wouldn’t be possible without Kids of Courage. This is a week to enjoy just being with everybody, having fun, forgetting about diseases.”
Volunteers zipped around the airport Tuesday, making sure equipment was in place. Some young people with pacemaker-defibrillators for heart conditions were stopped at a checkpoint for manual searches. Parents bid their children farewell with hugs and kisses.
Ezra waited patiently for his turn to board. His carry-on held 18 medications, his feeding device, a blue towel in case he needed to retch and a snack — a container of his supplemental formula. His counselor, Charles Manopla, 22, of Brooklyn, carried Ezra’s 12-pound mobile oxygen concentrator in case he needed it on the plane.
“He’s been jumping for joy whenever you mention the trip,” Lebeau says. “It’s a chance for him to be with other kids who are also getting meds, sleeping with oxygen, doing nebulizer treatments. It’s not unusual here.”
What part of the great adventure was Ezra looking forward to most?
“The jail,” he says with a grin, holding up his hands as if he was behind bars. “Being with my friends.”
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