We take so many things for granted every single day and donÃ¢â‚¬â„¢t even know it, like the simple act of walking outside and feeling the warmth of the sun on your face.
What if you couldnÃ¢â‚¬â„¢t do that?
Wayne CoffeyÃ¢â‚¬â„¢s excellent article in the NY Daily News on Sunday called our attention to a rare subset of very special people who donÃ¢â‚¬â„¢t have that very basic luxury. About 250 people in the United States and 1,000 worldwide have an affliction called Xeroderma Pigmentosum (XP), in which their skin and eyes simply canÃ¢â‚¬â„¢t handle ultraviolet light, be it from the sun, or even from fluorescent lights and television sets.
People who are affected by XP are about 2,000 times more likely to get cancer, and they often have to have up to hundreds of painful surgeries at very early ages. Their hearing and eyesight are often affected. Perhaps most striking, because of their condition, they canÃ¢â‚¬â„¢t go outside during the day unless every inch of their body is covered, forced to live a mostly nocturnal existence to avoid the dangerous rays of the sun. In addition, their life expectancy, though it has improved through research, is not as long as the rest of the worldÃ¢â‚¬â„¢s.
Thankfully, thereÃ¢â‚¬â„¢s a place up near Poughkeepskie, N.Y., named Camp Sundown Ã¢â‚¬â€œ created by the parents of a young lady with XP Ã¢â‚¬â€œ where people affected by the disease can come together free of charge for a healthy dose of nighttime fun. They hold carnivals, take trips and play games, all under the cover of moonlight and the supervision of caring and loving counselors. In addition, the Camp is part of a foundation that contributes money to researching XP.
And none other than the New York Yankees are making sure that these very special individuals have a very special evening.
On Thursday night, as part of the YankeesÃ¢â‚¬â„¢ Hope Week Ã¢â‚¬â€œ which included a visit on Tuesday from Andy Pettitte, Alex Rodriguez and Joba Chamberlain with little leaguer Tom Ellenson (see picture), who has cerebral palsy Ã¢â‚¬â€œ the campers will travel to the Bronx to catch some of the YankeesÃ¢â‚¬â„¢ game against the AÃ¢â‚¬â„¢s from their very own suite.
And after the game is over, Camp Sundown has the run of Yankee Stadium.