PHOTOS: When courage combats illness

c0c49f1696bf1d7b39f037c7c971c2c9

“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)



News
Entertainment
Sports
Lifestyle
National

Mutant worms stay sober, even on alcohol

U.S. researchers have developed "mutant worms" that do not get drunk by alcohol, a breakthrough that could lead to new treatment for people trying to quit drinking

Local

K-9 nose helps capture $150K in cocaine at…

A furry, four-legged security agent helped authorities stop an illegal cocaine shipment from sneaking past JFK customs.

National

Minnesota man asked to leave Southwest flight after…

A man and his two sons were asked to leave a Southwest Airlines flight after the man sent a tweet complaining about being treated rudely by a gate agent.

National

Man sues hospital after surprise penis amputation

An Alabama man who went in to a hospital last month for a circumcision awoke after surgery to find his penis had been amputated, his lawyer said on Thursday.

Movies

Review: Brett Ratner's big 'Hercules' movie is small…

The latest "Hercules," starring Dwayne Johnson as the half-god beefcake of Greek myth, strips its hero and tale of most of its fantastical elements.

Arts

Scientists recreate world's smallest Monet copy

Scientists have reproduced a famous Impressionist painting using nano-printing, to create what has been described as the world's smallest work of art. Reworked at the…

Television

Jerry Seinfeld is ambidextrous, and other Reddit AMA…

See some of the weirder highlights of Jerry Seinfeld's recent Reddit AMA.

Going Out

Grab a pedestrian and start dancing at What…

As a New Yorker, I’ve mastered the art of focusing my gaze straight ahead. Though it occasionally piques my interest, the absurdities that play out…

NFL

2014 NFL Fantasy Football Top 100 overall player…

2014 NFL Fantasy Football Top 100 overall player rankings

U.S. Soccer

NYCFC announce signing of Frank Lampard

The tease of a big signing Thursday by new MLS side NYCFC ended up being one rumored for weeks. England midfielder Frank Lampard agreed to…

NBA

NBA great LeBron James sends 800 cupcake apologies…

By Kim PalmerCLEVELAND (Reuters) - NBA star LeBron James, whose recent return to the Cleveland Cavaliers in his home state of Ohio sparked a frenzy…

NFL

Jerry Reese confident with Giants, skipping countdown clocks…

Last year, Giants GM Jerry Reese installed a countdown clock in the locker room to inspire Big Blue to play in their own stadium for Super Bowl XLVIII.

Tech

Forget Wi-Fi: Li-Fi could be the future

Li-Fi technology – developed by Mexican company Sisoft – is wireless internet connectivity using specialized LED light.

Tech

Weather app Climendo might be the most accurate…

The wait for a truly accurate weather forecast could finally be over thanks to a nifty new app called Climendo.

Tech

Napkin Table puts focus off the phone and…

Michael Jan, a design student at Tunghai University in Taiwan, has invented a serviette-picnic blanket hybrid called the Napkin Table.

Style

Essie's new Color Boutique

Essie launches high-tech kiosks at major airports and malls across the country.