Imagine being a kid with a rare disease that keeps you isolated from life. Now imagine getting a brief reprieve from that nightmarish existence where, for one night, you can simply enjoy being a kid. As columnist Rick Reilly wrote in ESPN The Magazine, the New York Yankees went to great lengths to make that dream come true.
The team facing Yankees ace A.J. 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. “That kind of gave us goosebumps.”
To get the kids out of the bus and into their VIP suite for the game, Yankees media-relations director Jason Zillo — the man who dreamed up the whole night — had to take them on a rat’s route of back staircases and tunnels to avoid any fluorescent lights. After the Yankees beat the A’s 6-3, the stadium lights had to be dimmed to 30 percent. Once they were, all the kids came running onto the field with smiles that could’ve lit up the Bronx.
“It’s cool to be part of this,” said Burnett, whom Zillo forced to leave at 3:15. “And it’s kind of mind-boggling. I can’t imagine if I couldn’t take my children outside.”
Eleven ghostly-pale XP campers took the field, including Yuxnier Beguebara, who is coming up on 71 operations, and Kevin Swinney, who has had over 200, and the rest of them, grinning through faces operated on so many times they seem to be covered in plastic. Feel sorry for them if you want, but they have one thing most kids will never have: For one night, the Yankees’ field was theirs.
They high-fived Derek Jeter, ran madly around the bases and wallowed in the instant carnival the Yankees had set up — from the magician to the bouncy castle to reliever Alfredo Aceves strolling the yard, strumming his guitar while Cashman sang the Police’s “Message in a Bottle.” For one night, at least, these kids found out they are not alone in being alone.
Not that they don’t play baseball at Camp Sundown. They do — at midnight, to the accompaniment of owls and bullfrogs — against the local fire department. “We’re pathetic,” says Caren Mahar. “But we always play.”
By 3:30, it was time to go, and there was no time to waste. They had to make it back to Camp Sundown before sunup. Welcome to life lived like a vampire.
On board the bus, Katie Mahar, 17, was whipped. Her hearing is down to 50 percent, and her vision is going fast, and her words are starting to lack vowels. But anybody could understand her as she kept saying, “That was a blast! What a blast!”
And I keep thinking of my friend Jason Zillo and the 14 years it took him to make this night happen.
“I saw one little girl,” he said afterward, exhausted. “When the centerfield wall opened and the whole carnival started coming out — she just started jumping up and down, over and over. She wouldn’t stop, she was so excited. People wanted to thank me. But that’s all I needed.”
And you thought the warmest light came only from above.
Click here to view all my baseball-related posts.
Click here to view all my posts about Rick Reilly.
ABOUT PHIL BOLSTA
Phil is the author of Through God’s Eyes: Finding Peace and Purpose in a Troubled World, a comprehensive guide to living a spiritual life. Who will benefit from reading it?
Anyone who is on a spiritual path, or wants to start one
Anyone who loves life, or wants to learn how to
Anyone who is happy, or wants to be happier
Through God’s Eyes won first place in the “Spirituality and Inspirational” category at the San Diego Book Awards on June 22, 2013.
Here is a two-minute video introduction to Through God’s Eyes.
• an overview of the book
• the complete table of contents
• the Foreword by Caroline Myss
• my Introduction
• chapter excerpts
• a sample end-of-chapter story
• endorsements from authors and thought leaders
Just click on the link below to download your free PDF sampler!
THROUGH GOD’S EYES PDF SAMPLER
Phil’s eBook, The Logic of Living a Spiritual Life: Supporting a Life of Faith Through Logic and Reason, is now available for 99 cents on Amazon.
Order it at GodIsLogical.com.
In this eBook, you’ll find answers to questions like:
• What is the cornerstone of a spiritual life, and why?
• What is the secret to liberating yourself from other people’s judgments and expectations?
• Why is there an exception to “Everything happens for a reason”?
Those who worship logic instead of God are only half right. Not only is it logical to believe in God and to live a faith-based life, the existence of a loving, benevolent God that governs all creation is perhaps the only systematic worldview that explains every aspect of life.
Schedule a Mastery Mentoring phone session with Phil to learn how to apply principles of spiritual living more effortlessly and effectively. Priced affordably! Click here to e-mail Phil for details.
Phil is also the author of Sixty Seconds: One Moment Changes Everything, a collection of 45 inspiring, life-changing stories from prominent people he interviewed, including Joan Borysenko, Deepak Chopra, geneticist Dr. Francis Collins, acclaimed sportswriter Frank Deford, Dr. Larry Dossey, Wayne Dyer, Dan Millman, Caroline Myss, Dr. Christiane Northrup, Dr. Dean Ornish, Dr. Rachel Naomi Remen, Dr. Bernie Siegel, James Van Praagh, singer Billy Vera, Doreen Virtue, Neale Donald Walsch, and bassist Victor Wooten.
Reading this book is like spending a few minutes face to face with each of the contributors and listening to their personal stories. Click here to read unsolicited testimonials from readers. Learn more by visiting the official Sixty Seconds website.
Sixty Seconds was one of three finalists in the General Interest/How-To category at the 12th annual Visionary Awards presented by COVR (Coalition of Visionary Resources) in Denver on June 27, 2009.