[Vision2020] Camp Sundown Shines in the Bronx (Rick Reilly)

[Tom Hansen]

Camp Sundown shines in the Bronx
By Rick Reilly

The team facing Yankees ace A.J. Burnett a few weeks back at Yankee
Stadium has to go down as the oddest in baseball history.

For one thing, it plays only at night. The players have no choice. Even
one minute of sunshine can kill them.

They're from Camp Sundown, in Craryville, N.Y., and they live life on the
other side of the sun. All of them have the rare disease known as XP --
xeroderma pigmentosum. If kids with XP catch the slightest UV ray, they
can and do develop cancerous tumors. Even fluorescent lights fry their
skin like boiling oil. Most of them don't live to be 20.

So how could they take the field at Yankee Stadium? Because this was 3
a.m. Superstar right-handers should be tucked into bed by then, yet there
was Burnett, throwing Wiffle-ball splitters and chasing down line drives.

There is no cure for XP. If you're born with it, you're one in a million.
There are only 250 known cases in the U.S. Until Camp Sundown was founded
14 years ago by Caren and Dan Mahar, whose daughter Katie has the disease,
few of these kids had met anyone else with XP. For most of them, Yankee
Stadium was the first MLB ballpark they'd ever seen -- and probably it
will be the last.

Getting here wasn't easy.

To make the seven-foot trip from the front door of Camp Sundown to the
curtained bus with double-tinted windows that took them to Yankee Stadium,
all the XPers had to wear hats, tinted eye shields, vats of sunblock,
turtlenecks, long-sleeve shirts, long pants and gloves. Even with all
that, they ran.

Because they couldn't leave until the sun was almost down, and because it
was a three-hour drive, they knew they'd be able to see only the last
couple of innings of the game. But then it rained, causing a
more-than-two-hour rain delay. While the rest of the crowd cursed, the
campers rejoiced. How lucky can you get? The bus arrived just before the
first pitch. "It was almost like the game was waiting for them to show
up," Yankees GM Brian Cashman said. "That kind of gave us goosebumps."

To get the kids out of the bus and into their VIP suite for the game,
Yankees media-relations director Jason Zillo -- the man who dreamed up the
whole night -- had to take them on a rat's route of back staircases and
tunnels to avoid any fluorescent lights. After the Yankees beat the A's
6-3, the stadium lights had to be dimmed to 30 percent. Once they were,
all the kids came running onto the field with smiles that could've lit up
the Bronx.

"It's cool to be part of this," said Burnett, whom Zillo forced to leave
at 3:15. "And it's kind of mind-boggling. I can't imagine if I couldn't
take my children outside."

Eleven ghostly-pale XP campers took the field, including Yuxnier
Beguebara, who is coming up on 71 operations, and Kevin Swinney, who has
had over 200, and the rest of them, grinning through faces operated on so
many times they seem to be covered in plastic. Feel sorry for them if you
want, but they have one thing most kids will never have: For one night,
the Yankees' field was theirs.

They high-fived Derek Jeter, ran madly around the bases and wallowed in
the instant carnival the Yankees had set up -- from the magician to the
bouncy castle to reliever Alfredo Aceves strolling the yard, strumming his
guitar while Cashman sang the Police's "Message in a Bottle." For one
night, at least, these kids found out they are not alone in being alone.

Not that they don't play baseball at Camp Sundown. They do -- at midnight,
to the accompaniment of owls and bullfrogs -- against the local fire
department. "We're pathetic," says Caren Mahar. "But we always play."

By 3:30, it was time to go, and there was no time to waste. They had to
make it back to Camp Sundown before sunup. Welcome to life lived like a
vampire.

On board the bus, Katie Mahar, 17, was whipped. Her hearing is down to 50
percent, and her vision is going fast, and her words are starting to lack
vowels. But anybody could understand her as she kept saying, "That was a
blast! What a blast!"

And I keep thinking of my friend Jason Zillo and the 14 years it took him
to make this night happen.

"I saw one little girl," he said afterward, exhausted. "When the
centerfield wall opened and the whole carnival started coming out -- she
just started jumping up and down, over and over. She wouldn't stop, she
was so excited. People wanted to thank me. But that's all I needed."

And you thought the warmest light came only from above.

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Burnett stayed into the early-morning hours to pitch Wiffle balls to campers.

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Cashman and Aceves play a little Police for the campers.

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Seeya at Palouse Pride, Moscow.

Tom Hansen
Moscow, Idaho

"The Pessimist complains about the wind, the Optimist expects it to change
and the Realist adjusts his sails."

- Unknown