When it comes to spunk and a sheer joy in living, it's hard to beat 6 1/2-year-old Shea Megale of Virginia Run.
She's the youngest of Megan and Larry Megale's three children and, by the way, she's in a wheelchair — not that that stops her one bit. She goes to school, participates in activities and, one recent evening, she and her brother Matthew, 11, both donned hats and had a swordfight.
Nonetheless, Shea suffers from spinal muscular atrophy (SMA) — a rare and terminal form of muscular dystrophy which has no cure. And Sunday, April 28, will be the fifth-annual, fund-raising 5K Walk for Shea Megale, with all proceeds going toward research. The hope is that a cure might be found in time to save her life and the lives of others like her.
The walk will be held rain or shine, beginning at 9 a.m. at the Virginia Run Community Center at Route 29 and Pleasant Valley Road. As always, Shea will lead the way in her motorized wheelchair to show her indomitable spirit and optimism.
Cost is $5 for adults and $3 for children under 18, and dogs and strollers are welcome. Register at the Virginia Run Community Center, 15355 Wetherburn Court in Centreville (703-818-0052). Or contact event coordinator Mo Nieves at Kellex@aol.com.
Last year's event attracted almost 500 walkers and raised nearly $10,000, and Nieves hopes to increase this year's proceeds to at least $13,000. Megan Megale says Shea doesn't consider herself unlucky in any way, nor does she want to be able to walk someday.
"She's totally comfortable with who she is — which is so cool," said Megale. "So we tell her that the walk is for kids whose families can't afford wheelchairs and for those who do want to walk."
Shea's a first-grader at Virginia Run Elementary and participates in the Jump Rope for Heart event there to help others. She considers every turn of her hand with the rope as a jump. At home, she has a little clubhouse outside that her grandpa built for her, and she put a sign on the door saying, "No people who walk allowed." Says her mom: "She's hysterical — the happiest kid on earth."
But even Shea does have some limitations, although she'd never admit them. She's able to attend school now, but has to stay home during the flu season and be taught by a Fairfax County-provided tutor.
"She misses socializing with the other kids at school, but it will be an inevitable fact of life that, from November to March, each year, she'll have to be taken out of school," said Megale. "She can't risk the chance of getting a cold or flu because it would turn into pneumonia."
Shea has a weak cough because she has little muscle in her lungs so, when she gets ill, she needs respiratory assistance with a special machine. "And if that can't manage it, then she's hospitalized," said Megale.
Still, she added, both Matthew and older sister Kelley, 12, find strength in Shea. "They see her have all these doctors' appointments, tests and X-rays," she said. "And she's so confident in herself. My husband coaches SYA lacrosse for Matthew's and Kelley's teams, and Shea asked him if he's going to coach her team, too, when she's 7. She doesn't see any boundaries for her."
However, the plucky little girl is now facing a new medical hurdle — and it's pretty serious. She and her mother recently went to I. Dupont Hospital in Philadelphia for a third opinion on some extensive back surgery she's going to have done. (One of the pediatric orthopedic surgeons there specializes in SMA).
"Shea has severe scoliosis in her lower back, and the doctors will put in an 8-inch metal rod, welded to her hip," explained Megale. "It acts like braces on teeth and tries to correct some of the curvature while the spine is still flexible enough to do it."
It's an eight-hour operation with a six-week recuperation period. Megale says all children with SMA end up having it but, once it's done, it will stop Shea's growth. "Usually, they try to wait until kids are 9, 10 or 11 — when they've done more of their growth," she said. "But she has to have it, within the next year, because of the severity of the curvature."
And this time, said Megale, Shea is scared. "This is the first thing she's been old enough to understand," said her mother. "It's extremely serious for SMA children to have an operation of this length because — after being on the respirator for so long, sometimes the lung muscles don't want to come off of it — and then they die."
But if anyone can get through it, she says, Shea can. Said Megale: "I'm very positive about that." Actually, she said, Shea's addressed the issue of dying.
"She asks questions — 'What does it feel like?'" said Megale. "I tell her heaven is beautiful, warm and cozy, just like when she was in my stomach before being born, and that's very comforting to her."
As for the upcoming walk for Shea, Megale says it's important for their family to be there — and equally important for all those participating in the event. "It reminds them that life is short and they're very lucky to have what they have," she said. "There's a lot of sadness in the world, but you just have to take the best out of every day."