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

[Joe Campbell]

I saw a TV spot on this recently. Very cool. And before you say  
anything bad about the Yanks check them out. They are a hard group of  
guys to hate. Best Yankee TEAM -- as opposed to collection of all- 
stars on steroids -- since 2000. Yanks vs Mariners tonight and the  
rest of the weekend.

Sent from my iPhone

On Aug 14, 2009, at 3:00 PM, "Tom Hansen" <thansen at moscow.com> wrote:

> 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.
>
> ---------------
>
> Burnett stayed into the early-morning hours to pitch Wiffle balls to  
> campers.
>
> http://sports.espn.go.com/i/mag/blog/2009/0811reilly2.jpg
>
> ---------------
>
> Cashman and Aceves play a little Police for the campers.
>
> http://sports.espn.go.com/i/mag/blog/2009/0811reilly1.jpg
>
> ----------------------------------------------------
>
> 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
>
>
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