Ooltewah family fights to find cure for 5-year-old boy [photos]

Ooltewah family fights to find cure for 5-year-old boy [photos]

May 27th, 2018 by Elizabeth Fite in Local Regional News

Grayson Ledbetter plays with a toy truck at his home on Tuesday, May 1, 2018 in Ooltewah, Tenn. Grayson has a rare nervous system disorder called Alexander Disease. The family has set up the group Grayson's Ladder to raise support and awareness for the disease.

Photo by C.B. Schmelter

Gallery: Ooltewah family fights to find cure for 5-year-old boy

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GLOVES UP FOR GRAYSON

When: Doors open at 6 p.m., and boxing starts at 7 p.m. Saturday

Where: Chattanooga Convention Center

Cost: Adult tickets are $20, age 18 and under are $10

More info: graysonsladder.org/glovesup

A rainbow-colored racetrack snakes across the Ledbetters' hardwood floor, scattered with toy automobiles, in their home in Ooltewah.

It's early May, and 5-year-old Grayson and his brother, Cooper, 9, just retired from playing in the backyard to test various members of their fleet, which consists of a palm-sized white Jeep, a red truck and a yellow tractor- trailer with beaming eyes for a windshield.

The boys drop everything when they hear the garage door open.

"Daddy's here!" Grayson exclaims, sprinting to the door. Josh Ledbetter, an account executive at a software company in Chattanooga, walks in and reaches out for a hug, but Grayson turns away, playing hard to get.

"I always joke that Josh is the big brother that neither one of them wanted, 'cause he picks at them all the time," says Laura Ledbetter, a nurse for a cardiothoracic surgery center in town.

On the surface, Grayson is a typical 5-year-old. He loves gymnastics, cartoons, horseback riding, music, karate and making messes. He's outgoing, energetic and loving.

But inside his young brain, myelin — the fatty covering that insulates nerve fibers — is deteriorating, blocking signals to his body and sabotaging his ability to walk, talk, swallow, grow and think.

Grayson has Alexander disease, a condition that stems from a genetic mutation. It's a type of leukodystrophy, a class of nervous system diseases that mostly affect infants and children and can be hard to detect, because they're rare, and individuals often seem healthy at first.

Only about 500 cases of Alexander disease have been reported since 1949, according to the National Institutes of Health. There are no known cures, and symptoms gradually progress, leading to death — usually within weeks to several years for children and a decade or more for adolescents and adults.

"At this point, there's nothing else that we can do for Grayson except to make sure he's in as many therapies and keeping him strong until hopefully there is a treatment," Laura Ledbetter says.

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Grayson's parents knew something was off long before his diagnosis in February 2017.

They'd watched their older son reach developmental milestones — rolling over, crawling, walking, talking — during childhood with far greater ease, said Lisa Spurlock, a physical therapy assistant with Children's Hospital at Erlanger who began working with Grayson when he was 14 months old.

"There was something inside them saying he was having to work too hard, and things weren't progressing the way you'd expect at his age," Spurlock said. "He just appeared to have some mild developmental delay early on, and for his quality of movement not to have changed, it was a red flag for us that perhaps something else might be going on."

Then, at 4 and a half years old, Grayson had his first seizure.

Tests revealed a neurodegenerative disease, likely some type of leukodystrophy, was to blame. The family was blindsided.

In his quest for answers, Josh Ledbetter found Children's Hospital of Philadelphia, one of the few centers in the world that treats leukodystrophies. The Ledbetters packed their bags.

There, Grayson endured three days of evaluations and was diagnosed with Alexander disease.

"I had been praying for healing for six weeks — that he would be healed and this wasn't our road," Laura Ledbetter said. "[The] answer wasn't at all what I wanted to hear."

The Ledbetters also met Dr. Amy Waldman, a pediatric neurologist who specializes in the disorder, and enrolled Grayson in a natural history study of Alexander disease. The purpose is to better grasp the condition, an essential step toward creating and testing possible cures.

"If we don't understand the nuances of the disease, then we can't develop a treatment," Waldman said.

Laura Ledbetter recalled the long plane ride home from Pennsylvania on a Sunday night two Februarys ago.

"He was No. 30 of kids in the study, so it was, I would say, a big blow to think you're going to be that alone," she said.

That evening, she connected through Facebook and then on the phone with another mother whose child is in the study.

"I really needed that," Laura Ledbetter said. "When we're in Philly, everybody there knows what Alexander disease is. But you say it here, and no one's treated it. No one's heard of it. It's definitely one of those times you don't want to be rare."

As time passed, her initial anger dissipated.

"Looking back on it, I feel extremely grateful and fortunate that we landed there, because it's the only place in the world that's doing anything for Alexander disease," she said.

Although finding a treatment is Waldman's primary goal, she said bringing the patient community, physicians, clinicians and therapists together is one of the greatest accomplishments of Children's Hospital of Philadelphia's leukodystrophy program to date.

"I started the program because the kids with the disease were sort of lost. These kids have a lot of needs. They don't have a medical home," Waldman said. "Families seem like they're alone and on an island, when lo and behold, there's families going through the same thing."

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In order to maintain his current level of functioning, Grayson undergoes physical, speech and occupational therapies.

Spurlock, who helps handle Grayson's daily physical therapy at the Siskin Early Learning Center, said constantly moving and building his core strength are paramount. However, it's hard to motivate a 5-year-old to do specific exercises, so therapy is embedded into play.

"We want to find things that spark the child's interest, because that may be an activity that they're going to want to do throughout their life that offers some therapeutic benefit to it," she said, "and we create obstacles when they don't even need to be there. For him to practice steps, we have steps up the sink."

But because it's so rare, there is a major hurdle to overcoming Alexander disease — money.

In an effort to generate awareness and fuel research, the Ledbetters launched in November Grayson's Ladder, a component fund of the Community Foundation of Greater Chattanooga. Since its inception, the group has raised more than $150,000 to combat the deadly disease.

The name and motto, "Climbing to a cure," came to Grayson's dad during an evening run.

"I guess he said 'Grayson,' but all I heard was 'ladder,' because he couldn't breathe," Laura Ledbetter said. "He's like, 'How about Grayson's Ladder? Climbing to a cure?' And I was like, 'That's awesome. I love it.'"

Waldman said support from families like the Ledbetters is essential to her work and the rare disease community.

"The families have made tremendous sacrifices, and we would not be in the position that we are without them," she said. "We're breaking down silos, and technologies that we use in one disease might help us in another disease that we might not think of yet."

Waldman hesitates to say when a treatment will be ready for clinical trial, but she's optimistic.

"All I've been saying is in the near future, and well within people's lifetime," she said, and there are signs efforts are gaining momentum.

Last week, U.S. Rep Chuck Fleischmann, R-Tenn., presented a congressional coin to Grayson, signifying that the congressman has joined Grayson in his journey.

"As a father of three, Grayson's story and the immense courage and strength of his family resonated with me," Fleischmann said. "It is my hope that with increased funding and awareness, we can soon find a cure for Alexander disease."

The next fundraiser for Grayson's Ladder is a boxing event on Saturday called "Gloves Up for Grayson" at the Chattanooga Convention Center.

"They're fighting the fight," Grayson's therapist Spurlock said. "I don't think the general public really realizes how many children live with rare diseases their hard work is going to pay off for children that otherwise would not have been on the radar."

Spurlock said Grayson is "bringing the light to a lot of things," including her own life.

"You appreciate things a lot differently when you see how a little boy is facing a very difficult and terminal illness. It's hard," she said, adding that he doesn't see himself different from other children.

"He's just a little boy in classroom 12 with his friends," she said. "And that's who he is — he's a little boy."

Contact staff writer Elizabeth Fite at efite@timesfree press.com or 423-757-6673.


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