Screven Co. mom hopes for specialized care closer to home as state pours millions into rural hospitals

SYLVANIA, Ga. (WTOC) - For 5-year-old Saylor Benton, living in rural Georgia means the specialty care that keeps him alive isn’t just down the road, it’s nearly four hours away in Atlanta.

Saylor was born with Spastic Quadriplegic Cerebral Palsy, a diagnosis that leaves him fully dependent on his family for nearly every part of daily life. He cannot walk or stand, relies on a wheelchair full-time, and requires extensive medical equipment just to safely leave the house.

His mother, Melody Benton, says raising a medically complex child in a rural community means constantly confronting gaps in local care.

“I had to inject him with his emergent dose, and it took 25 minutes for EMS to get here because there was just no one available. I think we only had one or two EMS trucks, and they were busy,” Melody said.

That wasn’t an isolated incident. Earlier this year, Saylor was rushed to a hospital in Savannah during a neurological crisis. Doctors there worked to stabilize him, but ultimately couldn’t provide the specialized care he needed.

“So that’s when they made the call, like, ‘We can’t do anything here. We’re gonna ship him to Atlanta,’” Melody said. “So they kind of just kept him stable through the night because no one was available until the morning.”

It’s a nearly four-hour trip the Benton family makes every two to three months for specialty appointments. Melody says the routine has become the family’s normal, even as it takes a toll physically, financially and emotionally.

Melody says the family has learned to navigate Saylor’s care largely on their own, piecing together information from specialists and their own research, since day-to-day management of his condition often falls back on them once they leave the doctor’s office.

“It’s more than a full-time job,” Melody said. “It’s like three full-time jobs: the nurse, the scheduler... everything.”

Doctors once told the Bentons that Saylor likely wouldn’t live past age two, Melody said. Now, at five years old, she says his medical team has stopped giving a timeline altogether.

“Every day, we’re seeing what happens and how it happens,” Melody said. “Day by day.”

Melody says she’d like to see more local investment in care for medically complex children and adults, not just funding aimed at hospital buildings, but resources that could actually treat patients like Saylor closer to home, or at least stabilize and safely transport them when local care isn’t enough.

“In each county, in Screven County, there needs to be one establishment for children and adults who have these complex needs, so we’re not having to figure out when we can get here or there, how we are even gonna do it,” she said.

The Family’s Urgent Need

Beyond emergency care, the Bentons’ daily reality centers on the physical demands of caring for Saylor at home and on the road.

Every outing requires lifting and transferring Saylor in and out of his wheelchair, loading and unloading his 40-pound wheelchair along with oxygen tanks, suction equipment and other medical supplies — often multiple times a day, with two other young children in tow.

Melody, who manages her own serious health conditions, says the repeated lifting and transferring has led to falls and close calls over the years.

The family is now raising funds for a full-size, wheelchair-accessible van with a side lift. It’s equipment they say would allow Saylor to remain safely in his wheelchair during transport, reducing the physical strain and safety risks that come with their current vehicle. The need has become more urgent with Saylor’s next surgery scheduled for March, after which he’ll need specialized transportation during his recovery.

To learn more about the Benton family’s story or to contribute to their fundraiser, visit their GoFundMe.