We take so many things for granted every single day and don’t even know it, like the simple act of walking outside and feeling the warmth of the sun on your face.
What if you couldn’t do that?
Wayne Coffey’s excellent article in the NY Daily News on Sunday called our attention to a rare subset of very special people who don’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 can’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 can’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 world’s.
Thankfully, there’s a place up near Poughkeepskie, N.Y., named Camp Sundown – created 
by the parents of a young lady with XP – 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 Yankees’ Hope Week – 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 – the campers will travel to the Bronx to catch some of the Yankees’ game against the A’s from their very own suite.
And after the game is over, Camp Sundown has the run of Yankee Stadium.
The field and clubhouse will be wide open for them to roam and explore. There will be magicians and other acts for them to enjoy, and the campers can experiment with the jumbotron and meet Yankees players, including A.J. Burnett and Jorge Posada, who’s well known for being very kind to special people.
What a class move by a class organization. I haven’t agreed with everything the Yankees have done over the years from a baseball standpoint, but one thing I’ve always appreciated is their ability to use their influence and resources to make a difference in the community. Under the radar, the Yankees have been contributing to Camp Sundown for years, but they’ve taken it to a whole new level of thoughtfulness with this first-ever sleepover in the Stadium, new or old.
We like to believe that good things happen to good people. So is it any wonder that the Yankees took over first place in their division on Tuesday night?
Here’s hoping the campers have the time of their lives that night, an evening they’ll never forget with memories that will last a lifetime. They’ll get to spend some precious time with their heroes – though honestly, those campers are heroes themselves for facing the world every day with the bravery and disposition that they do.
And regardless of whether you root for the Yankees – which I typically don’t – let’s all hope they win on Thursday. Though you know what? In the grand scheme, it doesn’t matter either way.
Everyone involved is a winner regardless.
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For more information about Camp Sundown, check out their Web site.
The economic difficulties in this country have extended to Camp Sundown. If you’d like to help with their research and pay for someone to attend the camp, you can help out for free just by buying stuff from a variety of sources, specifically from Amazon.com.
You can also make a direct donation to the camp, or volunteer to help if you’re in the area.
