Brightening their night at Yankee Stadium
It was 2 in the morning, and a soft, warm rain fell on the outfield of Yankee Stadium. The wet weather lent an almost surreal sheen to the after-hours on-the-field carnival that started late Thursday night after the Yankees' win over Oakland.
While most of the Bronx slept, the kids of Camp Sundown played in the rain until 4 a.m. with select Yankees players. Some took batting practice thrown by A.J. Burnett. Others watched a magician perform card tricks with Jose Molina. One camper, Meghan Fruchter of East Meadow, posed with Jorge Posada as her mother took pictures with her phone.
"It's a magic night,'' camp director Caren Mahar said. "These are kids who rarely get to play ball with anyone because there's no one to play with in the middle of the night. Now, here they are playing catch with the Yankees.''
Camp Sundown, located in Craryville, N.Y., is all about the night - because it is deadly for most of its campers to be outside during the day.
Mahar and her husband founded the camp for people with xeroderma pigmentosum - or XP, as the campers refer to it - after their daughter Katie was diagnosed with the genetic disease 14 years ago. On Thursday night, they drove a dozen campers and their families three hours to the Stadium for the game and postgame carnival thrown just for them by the Yankees.
XP is a rare and incurable disease. Those who have it are unable to repair the damage caused by ultraviolet light, meaning that even the briefest exposure to sunlight and some artificial lights can result in a deadly cancer or melanoma.
Until recently, it was uncommon for an XP patient to live past the age of 30. As they age, many become disfigured after multiple operations to remove cancers. Those with XP often lead isolated and lonely lives, tucked away at home when everyone else is outside.
XP families come from all over the world to attend Camp Sundown, with many meeting others like themselves for the first time. There they sleep during the day, go on field trips at night and forge friendships that they maintain throughout the year on the Internet.
"Without camp, I don't think I would ever have met anyone else with XP,'' Fruchter said. "I wouldn't have known anyone else like me.''
There are thought to be fewer than 2,000 XP cases worldwide and about 250 in the United States. The disease is so rare that most pediatricians never have seen it.
When Frances Fruchter began noticing odd white blotches on her daughter's arms around her first birthday, she was told that Meghan had allergies. That began a frustrating procession of tests and doctor visits as she saw the skin condition worsen.
"We finally went to Johns Hopkins when she was 21/2,'' Frances said, "and that's when they told us about XP.''
Fruchter vowed that she was going to give her daughter the same experiences that her two older sons had. And for the most part, she has.
Meghan graduated from East Meadow High School, traveling in a special bus with tinted windows and taking classes in specially equipped classrooms with air conditioners and darkened windows.
Meghan was a good student, but she assumed that going away to college was out of the picture. Then, at a college fair, she met a recruiter from Nazareth College in Rochester.
"It's so cold there that they have tunnels connecting all the buildings, even the dorms,'' Meghan said.
Five years later, Meghan, 23, has a degree in social work and is about to start a job with child protective services in Nassau County. It's a night job, and she has a car with tinted windows to get her where she needs to go.
Meghan was the only camper at Camp Sundown to have previously seen a major-league baseball game; she once attended a Toronto Blue Jays game in a dome. For the rest of the campers, attending a Yankees game was something they never thought could happen.
Parbathi Panthi, 32, was so excited to bring her younger sister Santoshi to the game that she agreed to go even though she had just had an operation on both her legs and another one on her nose that may cause her to lose it.
Panthi, who moved a decade ago from Nepal to Queens, is one of three children in the family to have XP. Her oldest brother died of the disease and another brother suffers from it back in Nepal. Santoshi, an ultrasound technician, supports all of them.
"I love baseball,'' Santoshi said. "This is a real treat.''
Also taking it all in was Kevin Swinney, 35, from Spruce Pine, Ala. Swinney, a Cincinnati Reds fan, was the oldest camper there. He has undergone 200 surgeries to remove cancers from his face and his head.
"This is just wonderful,'' Swinney said. "And the rain delay? We couldn't have asked for anything better.''
While most of the fans at Yankee Stadium were bemoaning the fact that Thursday's game didn't start until 9:40, it was a blessing for the campers, who couldn't arrive at the game before sundown at 8:45.
The Yankees had invited the camp as part of their five-day community service initiative that they called HOPE Week. The club hosted a different group every day, but the preparations for this one were the most elaborate.
A month before the field trip, directors from the camp came to the stadium with light meters. It was determined that the lights on the field would be too bright, so the Yankees turned them down by 70 percent for the carnival.
The Yankees have had a relationship with the camp dating to when their public relations director, Jason Zillo, saw a television show about the disease when he was an intern with the team 14 years ago. Zillo got the Yankees to donate items for a camp fundraiser. This year, when he heard that donations were down because of the struggling economy, he decided to reach out to the camp to see if the team could do more.
The campers had the run of the outfield until 4 a.m. On the field, there were clowns on stilts, men serving cotton candy, a jumping castle and a half-dozen baseball players.
It seemed as though the players got as much out of it as the kids did.
Said Posada: "Imagine growing up not being able to play under the sun for a little bit. We're baseball players. I couldn't imagine not being able to do that. I'm glad that they can be out here smiling and having fun, at 2 o'clock in the morning.''