I'd never heard of xeroderma pigmentosum until Bronx Banter alerted me to Rick Reilly's latest ESPN column. I generally consider Reilly an intolerable jackass but this column is very good. Just the thing to leave you feeling a little warmer on a wet Friday afternoon. Even Red Sox fans should tip their hats to the Yankees and, most particularly of course, the kids themselves:
The whole thing is worth your time. Incidentally, the Yankees currently - hurrah! - have the best record in baseball. Perhaps the Curse of Bush has, as one hoped, been lifted?“
The team facing Yankees ace AJ 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...