Payton Perry was 10 months old when a rare genetic disease called spinal muscular atrophy ended her life Aug. 5.

Since that horrifying day, her parents, Richard and Molly Perry, have dedicated themselves to raising money and awareness to fight a disease that currently has neither treatment nor cure.

Spinal muscular atrophy is a cruel, wasting disease that, over the course of 12 to 18 months, gradually robs its victms of the strength and dexterity to control their core muscles. Ultimately, the body becomes too weak to breathe.

According to a support website for families of people with the disease, the condition is 90 percent fatal and afflicts about one in 6,000 babies born each year.

“It affects more familes than you’d realize,” said Molly Perry, Payton’s mother. “People don’t even realize it’s a disease; it’s not something that people hear of until its diagnosed.”

It’s what is called a carrier disease, which means either parent may have the gene but display no symptom of the condition. When both parents possess the gene for spinal muscular atrophy, there is a one-in-four chance their children will develop the disease.

The Perrys’ son, Griffin, who is almost 3, has shown no indication of being sick. But he misses his sister.

“There’s no mandatory prenatal testing for it, and you have to wonder why not?” Molly Perry said. “It just needs attention. It needs funding and support from communities, because it’s not really getting any nationally, or from the federal government.”

Molly Perry, with help from friends and family, organized the first annual Chasing Babies 5K run in October, which drew 120 runners and volunteers to Mitchell Field and raised $8,500. They donated $5,500 to the Sophia’s Cure Foundation to fund gene therapy research; Molly distributed the rest to families of children with spinal muscular atrophy.

They plan to make the run a yearly event “until we have a cure,” she said.

The Harpswell couple also is working on a “Play for Payton Day” to be held at two preschool daycare and play centers in Westbrook.

Molly Perry said she also is encouraged by support from U.S. Sen. Susan Collins, RMaine, who wrote in an email to the Perrys she is co-sponsoring legislation to “strengthen federal research into pediatric diseases” by establishing as many as 20 national consortiums that would be modeled after the way the National Cancer Institute is operated.

While the Perrys have struggled to come to grips with their daughter’s absence, they have found strength through their spirituality and a determination to help others overcome, or at least to cope, with similar heartbreak.

Molly admitted “sometimes it’s still very hard” to comprehend the loss of their little girl.

But they take solace in helping other families cope with effects of the disease. They correspond regularly with a family in Lowell, Mass., whose son has SMA, and sent them any unused supplies after Payton’s death.

“We’re actually pretty good,” Molly Perry said. “We have our faith and that’s helped us.”

jtleonard@timesrecord.com