Shea Megale's positive attitude is due in great part to her parents, Larry and Megan, of Virginia Run. Shea, 7 1/2, makes her way in a wheelchair, but leads as full a life as can be.
"We tell her she's the same as everyone else," said her mother. "Everyone has things they can't do — she can't walk, I can't sing."
But she can, and will, lead the way Sunday, April 27, during the Sixth Annual Walk for Shea Megale. It's a 5K walk funding research for what put her in a wheelchair — SMA (spinal muscular atrophy), a rare and terminal form of muscular dystrophy which has no cure.
The event begins at 9 a.m. at the Virginia Run Community Center, at Pleasant Valley Road and Wetherburn Court, off Route 29 in Centreville. And it will be held, rain or shine.
Registration forms are available at the community center at 15355 Wetherburn Court, Centreville, VA 20120, phone 703-818-0052, or e-mail Mo Nieves at Kellex@aol.com. Cost is $5 for adults and $3 for children; strollers and friendly dogs are welcome.
Shea's the youngest of the Megale children; sister Kelley, 13, is a Stone Middle seventh-grader, and brother Matthew, 12, is a sixth-grader at Virginia Run Elementary, where Shea is in second grade. And the whole Megale family will participate in the fund-raiser.
"We'll all be there, running alongside Shea," said her mom. "She puts her wheelchair on top speed, and there she goes. No one can keep up with her."
Last year's event attracted nearly 500 walkers and raised almost $11,000, and Nieves wants to increase this year's proceeds to at least $13,000. "We would like to see many more people turn out for this wonderful cause," she said. The hope is that a cure might be found in time to save Shea's life and the lives of others like her.
"The National Institute of Health is distributing its grant funds in the next six months, and SMA is one of the diseases it's considering," said Megan Megale. "Right now, it's only funded by the parents."
Proceeds from the walk go to Families of SMA and are then given to the handful of scientists, worldwide, working on finding a cure. Donations may be made to Families of Spinal Muscular Atrophy, P.O. Box 196, Libertyville, Ill. 60048.
Meanwhile, within the next two or three years, Shea will have to undergo an operation for the severe curvature of her spine. "But it'll stop her growth, so we're trying to hold off as long as possible," said Megale. For now, Shea wears a body brace during the day.
"It's very uncomfortable and there's a lot she can't do, so we try to alter whatever the kids are doing to enable her to do it, too," said Megale. Sometimes, it's not possible, and she won't be invited to birthday parties where the guests will be roller skating. But we focus on the 'cans' — what she can do."
Shea has physical therapy and water therapy each week and especially likes to swim. She also loves traveling and, since four of her aunts live in New York, her family visits there often. "We see Broadway shows — 'The Lion King' is her favorite — she's seen it three times," said Megale. "And New York is her favorite city because everything is accessible to her — all the buses have lifts."
She also enjoys putting together Playmobil animals and people, exploring and playing with her friends and siblings. Still, said Megale, "It's harder for her, now that she's older and more aware of [being excluded from things]." Dad Larry coaches Centreville High's lacrosse team, Matthew and Kelley play SYA sports, and "Shea realizes she's never going to be part of a team."
So her parents try to keep her feeling as accepted as possible. And on the whole, said Megale, "She never looks at the cup as half-empty. She's a pleasure to have around — she's a gift."
And this year, for the first time, Shea's going to the Muscular Dystrophy Association's summer camp in Leonardstown, Md. It begins June 24 and lasts a week. "She's excited that there's going to be all kids in wheelchairs — she's packing already," said Megale.
There's a lake, handicap cabins and games the children will be able to do. And each child will have a volunteer to aid him or her. "Shea's psyched — she's ready to go," said her mom. "It'll be a wonderful week of camp for a regular kid."