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Comfort From Strangers: Born With a Rare Skin Disease, Payton Thornton Finds Support in the Surrounding Community
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Monday, April 20, 2009
By Brett Buckner
In the context of a small town, where faces are familiar even if names can't be called right off, the word alone is an exaggeration if not a total lie.
"Stranger" … sounds like an accusation, an indictment.
But in places like White Plains, Jacksonville and Alexandria, as well as hundreds of tiny geographical dots along the Southern landscape, there really is no such thing. Whether they're passing in pickup trucks on Main Street, silently parked beside each other at Sonic or strolling along the aisles at Wal-Mart, greetings are the same — a nodding smile, followed by a quick, polite wave.
In towns such as these, everybody's a friend, if only in passing. Perhaps those who are closer — maybe they cheer for the same football team on Friday nights or share the same church pew come Sunday morning — will stop and talk, asking about the kids or loved ones they have in common.
Small-town roots run deeper than fresh-water wells. Through good times and bad, strength and support is just a neighbor away. If someone hurts, everyone feels the pain, and if it's a child that's suffering, the whole community does whatever it can to help.
Payton Thornton is such a child.
Born with a rare genetic skin disorder called recessive dystrophic epidermolysis bullosa — "EB" for short — Payton's body does not produce collagen VII, a protein that serves as the glue to his top layer of skin. The slightest bump, friction or fall can cause painful blisters the size of water balloons.
His mother, Joy, and father, Reid, spend hours every day bathing and wrapping Payton in the layers of bandages that allow him to play — however carefully — with his older brother, Parker, and take hugs from his Mom and Dad.
But there is hope, even a possible cure. Dr. John Wagner, head of the pediatric Blood and Bone Marrow Transplantation Program at the University of Minnesota, is perfecting an experimental transplant using stem cells that has helped kids like Payton produce collagen VII.
The transplant alone will cost more than $500,000.
While insurance has agreed to cover the procedure, it won't cover the constant air travel, the battery of tests, all the medications, doctor visits, the cases of bandages and salves or follow-up treatments that Payton needs to survive. And after the transplant, Joy and Payton will have to live in Minnesota for six months while doctors and specialists keep a close eye on his recovery.
"None of that matters," Reid says, watching as Payton plays a wrestling video game on his Nintendo DS. "We're going to do whatever we have to do, whatever it takes to get our child well. We have a chance at a cure. The rest will take care of itself … one way or another. It has to."
And it has.
Small town celebrity
From his home in White Plains to Alexandria and Jacksonville and all across Calhoun County, so many people know his name, though most have never met the 3-year-old boy. They know his name because it's been whispered in prayer groups and written on grocery store signs. And they know his face because his picture has been in the newspaper and posted on lamp posts for roadblock fundraisers.
Through donations of dollars and dimes, raffle tickets, bow tournaments and Christian concerts, Payton has become something of a small-town celebrity. But behind the veil of recognition is a little boy in need of a medical miracle and the money to pay for it.
The community has risen to the challenge, helping Joy and Reid raise more money than they'd ever imagined possible. Joy estimates that upward of $12,000 has been donated in the past year — all going toward Payton's mounting medical costs.
"It been amazing," she said, smiling. "We've seen grown men, men who don't normally show much emotion, and seen their hearts just melt because of this little boy. He's touched so many lives, and those people have wanted to help.
"We don't have the words to thank everyone."
And those donations may come in use sooner than expected. Joy recently got word that Payton may be cleared for transplant as soon as the summer of 2010.
"We've come so far," she said, "but there's still a long way to go. But with what's already happened, we're really not worried."
'It's just the way we are here'
Hope Curvin first heard about Payton at a homecoming parade for Alexandria High School. One of her friends was talking about a little boy with a terrible skin disease.
Curvin has since organized yard sales and roadblock fundraisers, where she and other volunteers collected change from motorists stopped at red lights. But it wasn't until a 2008 high school football game, while "passing a can" around the stands collecting change and spare dollars, that Curvin got the chance to meet Payton face-to-face.
"I thought he was such a little trooper," she says. "It's that spunk, knowing all he's been through and continues to go through. I was expecting this poor little boy — all scared and shy. But that's just not who he is."
When Joy first started sharing Payton's story, it was with the goal of spreading awareness about a rare but devastating disease that even most doctors had never heard of. Because EB causes blisters, scabs and scarring, Payton was often subject to cruel and curious stares from people wondering how he'd gotten so badly burned.
"I just wanted people to know, to understand exactly what he's going through," she says, adding a final layer of bandage to Payton's tiny, red arm. "I never expected this reaction."
Strangers who suddenly knew Payton's name and entire life story would approach him like long lost friends, many wanted to know what they could do. Joy grins when telling about the Cracker Barrel waitress who recognized Payton from a newspaper article. One Sunday after church while the family was eating lunch, she came over to their table and gave away all of her tips from the day.
"There are so many wonderful, kind-hearted people," Joy said. "We think of the world today as this cold, cruel place, but that's really not true, especially not around here."
But that's just life in a small town, says Curvin, who lives in Alexandria.
"It's just the way we are here," she says. "Everybody takes care of everybody else. And you never know … next time it could just as easily be your children."
For all the money and awareness raised, what Joy finds most remarkable are the younger kids who've been touched by Payton's story. Those who have written letters and e-mails wanting to know what they can do to help.
Brooke Herndon was among them.
Back in February, the 13-year-old Jacksonville High School student heard about Payton from a friend. She went home, looked at some pictures online and couldn't get the images out of her mind.
"He's a little boy, not much older than my neighbors," Brooke said, "and I just kept thinking about how much they want for me to hug them. All he wants is the chance to be held and be loved. Instead, he's like a bystander having to watch all the time … it's not fair."
So for Lent, Brooke gave up eating meat two days a week and put the money she saved into a fund that would go to Payton. When that wasn't enough, she started babysitting and instead of getting paid in cash, she asks for a check to be written out to Payton Thornton. Brooke has set a goal of $200.
"I haven't reached it yet, but I'm not gonna quit."
She's never met Payton, but there's a greater lesson to be learned here. It's about more than simply raising money for a sick little boy. It's about doing what's right for someone else … even if that someone happens to be a stranger.
"If you're not going to help other people, then how are they going to know to help when you're going through something hard?" Brooke said. "If you pass by, aren't they just going to do the same?"
Bow Tournament to benefit Payton Thornton
When: Saturday, May 9
Where: Coosa Valley Archer's Range — Gate 8 Road, Anniston (follow "archery" signs off Alabama 202 and Bynum/Leatherwood Road) — Registration begins at 8 a.m.
How much: Cost is $20 for adults and $10 for kids 14-17, anyone younger shoots for free. All proceeds go to the medical expenses for Payton Thornton.
Copyright © 1998-2009 Consolidated Publishing. All rights reserved.
Source: The Anniston Star
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