Shea Megale, 11, of Virginia Run relies on a wheelchair and her dog Mercer to move around and accomplish daily tasks. Shea has a rare form of Spinal Muscular Atrophy (SMA), which is a genetic disease in which muscles degenerate instead of grow.
However, her mother Megan says that Shea doesn’t consider herself handicapped in any way. Full of spirit and energy, Shea led more than 500 people on “The Walk for Shea to Cure SMA” last Saturday morning, which began at the Virginia Run Community Center and wound past Shea’s school, Virginia Run Elementary. The event raised about $20,000.
THIS YEAR marked the 10th anniversary of the walk, which is designed to raise money for families with children who have SMA. Parents, kids, neighbors, friends, and even dogs came out to participate. Adults were asked to donate $6 and children $4.
“The gathering of so many people all willing to help my family cure a disease that very little research money has been dedicated to is something I am truly grateful for,” said Megan Megale. “Shea always looks at everything with the glass half full and she would tell you that the walk is for SMA, not for herself.”
In fact, this is exactly what the sixth-grader said. “I am really lucky,” she says. “Many people with SMA can’t talk or are mentally challenged. I already have a wheelchair, so that is why I say the walk is for SMA — to help families with kids who don’t have wheelchairs and who need a cure.”
Enjoying each day, Shea keeps herself busy by going outside, writing, going to lacrosse games at Westfield High where her father Larry is a coach, and watching favorite TV shows such as "Spongebob" and "Full House."
Shea’s mother is extremely proud of her daughter. “She just embraces life,” she says. “She has affected more people than I have in my entire life — and she’s only 11.”
AS FOR PEOPLE who affect Shea, her two siblings Kelly and Matthew are on the top of the list. Despite the normal sibling rivalries, the Megale children are very close. Also, Shea is a huge fan of her service dog, Mercer, who she got several years ago. Mercer sleeps in Shea’s twin bed, carries her backpack to school, and stays in bed with Shea all day when she is sick.
“I could sit here and tell you for three hours that Mercer is so cute and so smart,” says Shea. “But I’m not going to do that because that isn’t the big picture. The point is that he helps me mentally by giving me more independence and by being a best friend.”
Mercer walked alongside Shea on Saturday and both will be back next year to continue to raise money and awareness for SMA research.
Organizer Mo Nieves says the walk is a great way for everyone to become involved and help educate people about SMA. For Nieves, having a presence and seeing so many people participate is what it is all about. “We want our message to be heard,” Nieves says.
When asked to describe Shea, who she has known since Shea was only a few months old, Nieves teared up and said, “she is literally the most incredible person I’ve met in my entire life, and she teaches me something every day.”