“We have to live for today,” says Laurie Goldberger, a Manhattan mother of three.
But how many of us actually heed those words? For Goldberger’s eldest daughter, Perry, 22, living for today isn’t just an idealistic catchphrase: It’s a reality.
Perry was born with familial dysautonomia, (also known as Riley-Day syndrome), an inherited disorder that affects the development and function of nerves throughout the body. For Perry, living to see age 30 has always had about the same odds: 50/50.
But on Wednesday, Perry, and about 150 other kids and young adults like her set out on an adventure to conquer illness. Their ages range from 5 to 24 years old.
According to Dr. Stuart Ditchek, medical director and co-founder of “Kids of Courage,” a volunteer organization that helps sick children and their families, the best way to fight a terminal, incurable disease is simply by having fun.
“The fact is when the kids are traveling, they’re happier, and that makes a difference,” Ditchek told Metro. “That’s why we’ve been fortunate enough to have so few emergencies, I’m sure of it … the kids are just happy.”
The aim of Ditchek’s charity is to take the children on a free vacation they’ll never forget, and hopefully to form long-term friendships with other kids along the way.
On Wednesday, the group — including 41 kids from the five boroughs — began their nine-day journey. Starting at Newark airport, the group chartered a United Airlines flight bound for Los Angeles.
Aboard, there was a volunteer ratio of three medical professionals/counselors to every one child. Such a ratio is not without reason, said Alderstein.
“Over 30 children are using portable oxygen on the flights; that’s a world record,” he explained.
The traveling expenses are massive, about $750,000, and the labor involved is daunting. All the funds are donated.
But the campers had things other than time and money on their minds: “The flight is my favorite part; we have a huge pillow fight every year!” said Levine Elyse, 16, of Far Rockaway.
And once they're in L.A. ....
And if you thought getting off the ground was a challenge enough, wait until you hear their itinerary in Los Angeles: It includes a trip to Universal Studios, Disneyland, Venice Beach, and a red carpet joyride in 20 Lamborghinis through the streets of Beverly Hills.
“I just hope there are some swimsuit models with the Lamborghinis … that’s not too much to ask for, is it?” joked Bronx native Tzvi Herzfeld,13, who has muscular dystrophy.
(Photos by Miles Dixon)