Mepham students step up for a cause

Only 6 months old, Sophia Gaynor of Bellmore is bringing out the best in hundreds of local high school students.

Around 300 people turned out at Mepham High School's track on Oct. 22 to take a part in a walk-a-thon to benefit the charitable organization, Sophia's Cure. The organization is named for a local newborn who was diagnosed with fatal spinal muscular atrophy, a group of diseases that affect the motor neurons of the spinal cord and brain stem.

"When we got the diagnosis, the doctor told us your daughter has SMA Type 1. She has a 50 percent chance of making it to six months, but the rest don't make it past two years of age," Vincent Gaynor, Sophia's father, said. He explained that his daughter's diagnosis of the most serious form of SMA, Type 1, devastated him and his wife, Catherine, who felt doctors dismissed Sophia because of the severity of her disease. "After being devastated and crushed and just laying in our bedroom and crying for two weeks, we decided that wasn't a good enough answer and decided to fight," he said.

The Gaynors quit their full-time jobs to care for Sophia, and to start Sophia's Cure, which raises money for SMA research. In five months, the Gaynors have raised more than $100,000.

"If we can prevent one family from going through what we're going through, it's worth it," Gaynor said.

Mepham health teacher Barbara Gai, who advises the school's Students Against Destructive Decisions club, read about the Gaynors' plight from a news clipping in a local smoothie shop. She was moved by their story and suggested that SADD donate the proceeds from its annual walk-a-thon to Sophia's Cure.

SADD President Allison Baylogh, a Mepham senior, said, "In the past two years, our causes were kind of big organizations, and unlike those years, this is a really local cause, and I think people feel for it more because it's in our community."

For Baylough and other students, the event was bitter-sweet, because Sophia would be a Mepham student if she lived to her teenage years. But most of the students realized Sophia most likely won't benefit from the funds raised in her short lifetime.

"Sophia was going to go to Mepham; she's really a part of our community," Baylough said.

As Gaynor stepped aside to high-five and shake hands with all of the students who came out to support Sophia's Choice, he said, "My drive, my passion, is to end this disease."

To learn more, visit www.sophiascure.com.