Carnival of Hope

Preisler@jeromepreisler.com
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

hope_clown_072409.jpgIt’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.

hope_posada_072409.jpgAbout 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.”

hope_damon_072409.jpgThe 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.

9 Comments

What a great story. I really enjoyed the article, and it was very well written. I write an Angel blog myself, I know you must be a pretty busy person, but if you could take a read and let me know what you think i would be forever appreciative. Hope we meet each other in the playoffs!

Hey JP,

Thanks for the article. I know there were tons of events all week. it was good to read about this particualr one. Mattwest, good luck with your blog and we hope to meet you guys too…if JP gets the chance he will be in touch for sure, he is a great writer, isn’t he? Let’s go for 8 in a row tonight!

This was truly a great article. The writer did a fantastic job as well as Jason Zillo of the Yankees. I first met Jason back in 1998 when the Yanks helped my son. I knew he would become a great employee for the Yanks. Jason is doing something the Yanks desperately needed, community outreach. It makes me proud to be a Yankee fan and I look forward to next years events.

Wow! Hope Week is nothing short of incredible! Imagine if all MLB teams followed suit and made it a yearly event!

Thanks for such an inspiring recap of the night’s events. Knowing this was going to happen, I felt bad about the rain delay. . . How perfect that it allowed the kids to see a complete game! Just Perfect!!

JP these are the types of things that makes you realize they are the true heroes in the world. They bear the weight of their disease so mightily and bravely. Thank for sharing.

All: It was a struggle to find words to convey how emotional and inspiring this event was. Christa Robinson and Joe Auriemma were the two folks from YES who stayed into the wee hours talking to XP kids and their families, and putting together a video piece that I assume will air on one of the pre-game shows. I hope everyone catches it, and runs with the spirit of generosity and volunteering that inspired this whole thing. I know I will.

I also encourage everyone to read Jon Lane’s great story about George Murray, the Army veteran stricken with ALS who was invited to the Stadium for HOPE week. Jon busted his tail to get the story down, and helped me arrange to attend the carnival. He and I have compared notes, and were similarly moved by our experiences.

JP,
I’m proud of you, buddy. The story, and more importantly, your involvement in the event, kicked butt. Maybe you weren’t quite as involved as the players – but you know, nobody put a gun to your head, to make you be there, at 2 AM, in the rain. Way to go, son. It’s ironic as hell that, the first time I am so moved by one of your columns, that I decide I simply have to give you one of those five-star ratings we discussed, and risk swelling your head in the process – wouldn’t you know it? They up and junked that system, when I wasn’t looking…figures. So, here you go! ***** Show that to The Wife, and tell her I think you earned a smooch.

Rick Rodriguez

Jerome, once again, you’ve touched my heart & helped to center me. What a beautiful article & what a wonderful thing the Yankees have done! (I hope these muti-millionaire players are also helping big time with their wallets as well.) This is the first I’ve heard of this awful desease. This certainly gives me something to think about when I complain about all the cloudy/rainy weather we’ve had this summer. Thank you again & thank you to the Yankees. Jude

Jerome, Not only did I read the Lane peice but there was something on YEs this past weekend and I am not 100% sure, but think I saw you in one shot on TV…LOL. Anyway, great week at Yankee stadium game wise and after game wise. A great orgnaization! The Yanks as we know are here for three games and yes, we will be in attendence at the Trop to keep the winning going and burry the Rays. It is time to make this the two team race we are all used to (I hope). This series will really make or break the Rays in my opnion.

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