Results tagged ‘ Xeroderma Pigmentosum ’
Back in July during the Yankees’ wonderful HOPE Week, I wrote a column about the team’s post-midnight to dawn carnival on the field for Camp Sundown, a retreat in upstate New York serving people afflicted with a rare genetic skin disorder called Xeroderma Pigmentosum. XP prevents sufferers from going outdoors in daylight, and ultraviolet light, including common florescent lighting, causes them severe burns and eventually skin and eye cancer. The camp was founded by Caren and Dan Mahar when their daughter, Katie, was diagnosed with the condition.
Xeroderma Pigmentosum takes the lives of most people with the disorder before they reach the age of 20. It is so rare there are only between 150 and 250 sufferers in this country, maybe two or three thousand around the world. Having the chance to meet and write about Dan, Caren and some of the Camp Sundown kids was one of the most rewarding experiences of my professional career. Their courage and spirit continues to inspire me.
On Saturday, October 17, Camp Sundown will be holding its 11th annual Moonlight Stroll, a nighttime walk in Central Park to raise awareness of the condition and funding for XP research. The walk begins with registration at 8 p.m. outside Tavern on the Green, which is located at Central Park West between 66th and 67th Streets. Caren informs us “there will be refreshments, goodies and prizes and a good time for all.”
The camp will have a bus coming from Columbia County in New York, and stopping in Dutchess County for anyone coming who needs a ride. A registration form is available for those who wish to get sponsors for the walk.
“Can’t make it to NY?” says Caren. “Don’t worry! Do your own walk wherever you are! Fill out the form, get sponsors and walk on the same day.”
For further information or a sponsorship form, please email Camp Sundown at firstname.lastname@example.org. And bring everyone you can. The more the merrier!
On a personal note, I will be participating in the Midnight Walk, as will my wife Suzanne. We would love to say hello to any readers of Deep in the Red who wish to join us for a late night in the park. Hopefully, we’ll all be able to talk about some Yankee playoff wins.
Finally, I’ll be at Yankee Stadium tonight to observe and gather some interesting thoughts about the final regular season game of the new Stadium’s first year. It should be fun as the Yankees continue ramping up for the postseason.
I believe everything we dream
can come to pass through our union
we can turn the world around
we can turn the earth’s revolution
we have the power
People have the power…
–Patti Smith, People Have the Power
It’s maybe one o’clock, two o’clock in the morning, and the carnival’s in full swing out in deep center field at Yankee Stadium for Camp Sundown’s young people and their families.
I’m looking around, overwhelmed, as music pumps from the sound system. There’s a Stilt Man in a crazy black suit and red vest cracking jokes from 10 feet up above me. A juggler and a clown. The Camp Sundown kids jumping around inside the Bouncing Castle with giddy, joyous abandon.
It seems like half the Yankee team is out with those kids, and the whole front office, all the execs we usually see in suits and ties at player signings, here tonight in blue jeans, out under the stadium lights long after the baseball game is over, long after midnight’s come and gone, here at this carnival of hope. Rain’s drizzling down on everyone, the grass wet and slick, and nobody cares about any of it.
This is about the kids. These courageous, beautiful kids and their families, who must endure so much that is incomprehensible to most of us.
Camp Sundown gets its name because the youngsters that attend cannot go outdoors during the daytime or even stand under fluorescent lights because ultraviolet radiation, any UV radiation, is their mortal enemy. It will give them severe burns, it will give them squamous cell skin cancer, it will cause malignant tumors to grow in their eyes and mouths, and make many of them blind as their condition reaches its late stages. The sun and blue skies we wish for in spring and summer will cruelly ravage their bodies.
The kids, these fragile, beautiful kids, who want nothing more than to be whatever we like to call ordinary in this world, are afflicted with a genetic condition called Xeroderma Pigmentosum that takes the lives of most people with the disorder before they reach the age of 20. It is rare, so rare there are only between 150 and 250 sufferers in this country, maybe two or three thousand around the world.
Camp Sundown was founded 13 years ago by Caren and Dan Mahar when their daughter, Katie, was diagnosed with XP, it is a year ’round retreat in Craryville, N.Y., two hours north of Manhattan by car, where as many of these children who can come are able to mingle like other children, where their days are like most of our nights and their nights are like our days, because daylight will kill them.
And here, after midnight, they are at Yankee Stadium, having arrived by bus around 8:30 to watch a game delayed for two-and-a-half hours because of rain. And whether that rain came through Providence or chance or magic, you have to believe it is a blessing and want to kiss the clouds that brought it, because if the game had started when it was supposed to, before dusk, the group would have been unable to see the early innings.
“It was perfect,” Caren says on the field. “I didn’t think these kids would ever be able to watch a game from start to finish like they did tonight.”
How this night all became a reality was through Jason Zillo, the Yankees’ head media relations guy, who seems almost uncomfortable taking credit for an event that is part of a whole week of events at the Stadium called HOPE Week, an idea that came straight from his heart.
About 14 years ago, soon after Katie Mahar (pictured with Jorge Posada) was diagnosed with XP and her parents had started an organization called the XP Society, Zillo was moved by a piece about the disorder on a televised news magazine, and after meeting Dan and Caren stayed in touch with them over the years, quietly helping out with benefit auctions. This is before he was a Yankees media honcho, this is when there were no reporters or cameras around. And maybe a month ago when he brainstormed HOPE Week, Zillo phoned Caren, and asked what she thought about bringing down the Camp Sundown kids to be part of it and she replied, “You make it happen and we’ll be there.”
And here they are, and around us everything seems to be happening at once. Yankees Alfredo Aceves and Brett Gardner kicking soccer balls around with some of the young people. Pitching coaches Dave Eiland and Mike Harkey getting a game of wiffle ball going with others.
Meanwhile, A.J. Burnett spots a wide-eyed girl noticing his tats, and patiently stops to tell her a little about them before moving on to pose for pictures and sign autographs for a bunch more wide-eyed kids. And there’s Mark Melancon and David Robertson and Cody Ransom just hanging out with them, and Jorge Posada posing for pictures with the families, and Jose Molina, who seems to be everywhere, and whose heart is the size of the Great Bear constellation, and who can sound wise making the simplest points. I’m naming all these players because none of them are out here at one o’clock, two o’clock in the morning to be named or interviewed or seen on camera. They are not here for publicity or accolades, they are not here for any reason other than wanting to be here.
“You don’t even care about the rain, you don’t even care about nothing, you just care about those kids … and that just for one night they’re just having fun like we do,” Molina tells me. “It’s one of those things that you put your heart in.” He motioned at the excited kids around us. “They’re happy. They’re really happy. A lot of times we have nothing going on, and we still complain a lot about life. And these kids they never complain about anything. And nothing is more impressive. “
He’s right, I told you he is a wise man. Nothing is more impressive than the kids, those incredible kids of Camp Sundown ….
One camper tells me the retreat is a home away from home, and that her wish is for “people with a condition to realize they’re no different from people without a condition.” Talking about her night, she spreads her arms to try encompass the field, the experience, and her emotions.
“Tonight was awesome, it was so great. The Yankees! It’s so amazing that they’d open their hearts just for Camp Sundown for one night. It’s pretty phenomenal.”
“I loved it,” says Yuxnier Ladron Gegubbara of the game. Yuxnier’s been a Camp Sundown kid for four or five years and is grateful to Dan and Caren for establishing it. “It’s a great place where kids with XP can meet each other, have fun, and enjoy themselves.” When asked what he wants people to know about XP, he says, “It’s a really hard life, especially because we can’t go out in the sun. I always go out after the sun goes down, after sunset, around eight or nine p.m. I do home instruction, and they only give me one or two hours in school, which is in my house. And it’s real hard.”
The hope is that maybe someday in Yuxnier’s lifetime it won’t be. After a decade or more of being stalled by the politics of ignoran
ce, changes in stem cell research legislation has made genetic therapy for XP sufferers a real possibility. This research needs funding and popular support at a time when everyone’s strapped and understandably worried about their own difficulties. But you should know that over a million skin cancers are diagnosed annually in the United States alone, meaning one in five of us will likely be stricken with it, and that what helps the small number XP sufferers in the country can also help the people nearest and dearest to you.
Caren Mahar realizes it’s a tough time economically. “You hear of charities folding right and left,” she says. “It’s important to research the charities you want to do, but also to realize there are small groups out there that even a little bit makes a huge difference. We’re not looking for million dollar donors.”
Money is vital to keep Camp Sundown going. But for the Mahars, charity is also about individuals giving of their time. The retreat is run entirely by volunteers, so people can sign up and just be with the kids for a while.
“One of their greatest problems is that a lot of them go through a lot of disfigurement as they get older, through the hundreds of surgeries that they have,” Caren explains. “They’re ostracized in their own social areas, where people never talk to them. So just sitting down and treating people like people is very much necessary. “
For information on Camp Sundown and the XP Society visit its Web site.
I believe everything we dream can come to pass through our union.
HOPE Week photos copyright of the New York Yankees.