NEW YORK, July 25, 2009 — -- When the sun goes down in New York, the day is just beginning for a group of one-of-a-kind campers. They're all members of Camp Sundown, where day is night, and night is day. Unlike typical camps, everything from catching bugs to playing baseball is done in the dark.
Caren and Dan Mahar started Camp Sundown in 1996. The camp caters to children living with a rare genetic skin disorder called Xeroderma Pigmentosum, or XP, in which any exposure to ultraviolet rays causes third-degree burns and can lead to cancer. The campers range in age from 6 to 32, with most in the 13 to 17 age range.
For the Mahars, Camp Sundown hits home. Their 17-year-old daughter Katie was diagnosed with XP nearly a decade ago.
"We try to bring what normal camp children would do during the daylight hours, like catching butterflies. We'll catch the lunar moths," Caren Mahar said. "We do normal kids stuff -- we just turn the night around and do it at a different time of the day."
There are only 150 known cases of XP in the U.S., and more than 1,000 cases worldwide, according to the XP Society. There is no cure for the disease, and life expectancy is about 30 years. Without Camp Sundown, many of the children living with the disease would have no playmates at all.
"I don't feel left out when I'm in camp," said camper Chris Soto, 16. "When I'm outside of camp, I just feel left out."
Little did Chris know, he and his fellow campers were about to get the star treatment of a lifetime.
The group of 28 was invited to watch to watch the Yankees take on the Oakland Athletics July 23 at Yankee Stadium. They arrived by bus after sundown, to an exclusive press-box suite and gift bags full of Yankee memorabilia. But for these fans, the end of the game was just the beginning of the fun. They were invited down to center field to greet the players, an exciting meeting for all involved.
"That's all they ask for is to be accepted, to know that they are loved," Dan Mahar said. "When a house as big as Yankee Stadium opens up and says come and play on my lawn, that sends a pretty powerful message that these children's lives do matter and they are accepted."
While at Yankee Stadium, the campers were treated to a carnival and magic show among other things. For Yankees players, it was a chance to share something they love with Camp Sundown.
"These kids can't go outside. They can't play baseball," said Yankees catcher Jorge Posada. "We shut the light, we shut the sun so they could watch the game and play on the field. No question, baseball should be in their hearts every day."
At 3:30 a.m., it is finally time for the campers and players to say goodnight. Dan Mahar is convinced it has been an experience the kids will never forget.
He said, "This is a night that will stay with these children until the day they die."