Come Sunday morning, April 25, Shea Megale of Virginia Run will do what she does, each year at this time — lead the way in the fund-raising walk that bears her name.
And although she's in a wheelchair, she's always an eager and enthusiastic participant. Says walk coordinator Mo Nieves: "Shea leads people on a 5K walk throughout the community, showing her determination and spirit for living life to the fullest."
The daughter of Larry and Megan Megale, Shea, 8 1/2, has SMA (spinal muscular atrophy), a rare and terminal form of muscular dystrophy which has no cure. The Seventh Annual Walk for Shea Megale will help raise money for research, in hopes that a cure might be found in time to save Shea's life and those of others like her.
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. It's held, rain or shine, and registration forms are available at the Web site, www.walkforshea.com. Cost is $6 for adults and $4 for children under 18; strollers and friendly dogs are welcome.
Last year's event drew 650 walkers and raised $13,000, and Nieves hopes for similar figures, this time. "It's an activity for the whole family," she said." And we need their support for this worthy cause."
Shea's older siblings both attend Stone Middle School. Sister Kelley, 14, is in eighth grade, and brother Matthew, 13, is in seventh grade. Shea is a third-grader at Virginia Run Elementary, and she and her whole family will participate in the walk.
Proceeds go to the handful of scientists, worldwide, working on finding a cure. In addition, donations may be made to Families of Spinal Muscular Atrophy, P.O. Box 196, Libertyville, Ill. 60048.
Shea's dad Larry coaches Centreville High's boys lacrosse team, and she's right there on the sidelines, cheering on all the players. "She's at every lacrosse game — she's practically the mascot," said her mother, Megan Megale. "They all know her."
In fact, she said, the lacrosse team showed up in their Centreville jerseys, last year, and participated in the Walk for Shea. "It was a surprise," said Megale. "And it meant so much to Larry."
Shea likes to swim and has water therapy, as well as physical therapy, every week. She also loves traveling and visiting relatives in New York, plus exploring and playing with her friends and siblings.
Within the next few years, she'll need an operation to correct the severe curvature of her spine. But since it'll stop her growth, her parents are holding off on it, as long as possible. In the meantime, she wears a body brace during the daytime.
REGARDING MEDICINE, the National Institute of Health has now begun clinical trials testing a new medication to slow down the progression of the muscle deterioration. And starting next week, Shea will be one of the participants. "SMA is starting to get noticed," said Megale. "It's catching the eye of some researchers — which is great."
But that's not the only great thing happening in Shea's life — she's about to get her very, own dog. "For three years, we've been trying to get her a companion dog," said her mother. "We've applied to multiple programs, but most charged $20,000."
However, Canine Companions for Independence provides such dogs for free. "It's difficult to get into this program, and it involves four interviews and references," said Megale. "It's worse than applying to college."
But luckily, Shea was one of the handful of people accepted out of the hundreds that applied. Her family got the good news last Monday, April 5, and it means she'll have a particular pal to help her with many of the difficult details of every-day life. The companion dogs are specially trained to do things for their masters such as open doors, turn on lights, carry their backpacks and lunches, pull up their covers at night, open refrigerators and even jump up onto counters to pay for things and receive change.
"I think it's awesome," said Megale. "For Shea, it takes the attention from her being the child in a wheelchair to her being the child with a dog. She is so excited."
In return, Shea will bring positive publicity to the program. "She'll be able to handle the dog and, since she has a strong personality, they feel she'll be a great spokesperson," said Megale. For example, Shea and her dog will give demonstrations at the Abilities Expo and will also help solicit corporate donations for the program.
But first, she'll attend an intense training program, May 5-15, in Medford, N.Y., where she'll meet and get used to working with her furry, four-footed buddy.
"IT'LL PROBABLY be a Labrador or a golden retriever," said her mother. "On the second day, they'll bring in the dogs and let them choose the people they want." And on the last day, if possible, the people who raised the puppies get to meet their recipients.
Afterward, the dog will attend school with Shea, lying quietly under her desk. And her mother says that's just what she needs. "She's timid about going to school because sometimes she needs help," said Megale. "Now, if she drops something, she has to ask people to pick it up. But the dog will not only pick things up, but will also give her the confidence to take someone she loves to school with her."
But before all that happens, there's a fund-raiser to tend to. Megale said the Walk for Shea is also important because it raises awareness of the disease. "It's really exciting, because every person who walks may tell someone else about SMA," she said. Under the umbrella of muscular dystrophy, it's the smallest in numbers of all the diseases.
"What I hoped the walk would do is bring to light this teeny, tiny disease, and it's beginning to do that," said Megale. "Anyone who has a child with a disease hopes that something will draw attention to it. So every, single person who shows up makes a difference to us and, hopefully, makes them realize how lucky they are."
She wants them to understand that life is short and should be looked at as "the glass being half-full, not half-empty. And with all the struggles Shea has, that's what she does — every day of her life."