One in every 6,000 babies is born with Spinal Muscular Atrophy (SMA), and Virginia Run's Shea Megale, 11 1/2, is one of them.
But a walk held every year in her Centreville community helps raise money toward a cure to help her and others like her who have this rare, incurable form of muscular dystrophy.
THIS YEAR'S "Walk for Shea," the 10th annual, will be held Sunday, April 29, at 9 a.m., come rain or shine. It begins at the Virginia Run Community Center, at Pleasant Valley Road and Wetherburn Court, off Route 29 in Centreville.
Register at www.walkforshea.com. Cost is $6, adults and $4, children under 18; children under 2 are free; strollers and friendly dogs are welcome.
"I'm amazed that it's gone on so long," said Shea's dad, Larry Megale. "It's never gotten old for people to do this — to raise money for research to find a cure. And it's a great feeling to know we're not alone in doing this."
Nearly 600 people participated in last year's walk and raised more than $25,000, and it's hoped that this year's event will be even bigger and better — and that the weather will cooperate.
"The last two years, it was pretty chilly and we still had droves of people coming," said Megale. "So I hope this year is warm and sunny, as a reward for everyone who came then."
A sixth-grader at Virginia Run Elementary, Shea will lead the walk with her beloved companion dog Mercer. But as far as she's concerned, the event proceeds are for other children.
"I'm fine the way I am," she said. "I can buzz around in my wheelchair. It's important to raise enough money to help other kids who don't have wheelchairs."
Shea's the youngest of Megan and Larry Megale's three children and is spunky, cheerful and full of life. Larry is an engineer with Blackbird Technologies and assistant coaches Westfield High's girls varsity lacrosse team.
Shea's sister Kelley, 17, a Westfield junior, plays on that team. Brother Matthew, 15, is a sophomore at Westfield. As always, the whole Megale family will participate in the walk; and Shea and Mercer, a 5-year-old black Labrador, are the unofficial grand marshals.
MERCER CAME from Canine Companions for Independence, which trains dogs from birth and places them with people with disabilities. Then each dog is trained specifically to meet its new owner's individual needs.
Shea idolizes Mercer. "He's my best friend," she said. "He sleeps in my bed; he's my camp comfort."
At school, her dog snoozes under Shea's desk. But whenever she calls him, he springs into action, ready to do whatever task she needs. Mercer opens doors for her, turns on lights, picks up anything she drops and carries her backpack.
Shea enjoys swimming and has water therapy, plus physical therapy, every week. She also loves traveling, visiting relatives in New York and playing lacrosse with her dad and siblings.
In addition, Shea likes reading books by Bill Wallace, who writes funny stories about animals. And she has fun helping her mom garden and bake sugar cookies.
Besides being a nice, family outing for a good cause, the annual Walk for Shea also helps raise public awareness about SMA. One in every 40 people carries the gene that causes it. That means the child of two carriers has a 1 in 4 chance of developing this disease.
Those who can't participate in the upcoming walk, but would like to contribute toward a cure, may send checks payable to Shea Megale Fund Corp., c/o Walk for Shea, 6302 Rockbridge Place, Centreville, VA 20120.