An extremely rare, fatal disease is destroying their son’s brain, but that won’t stop them from finding a cure

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.

By Elizabeth Fite May 27, 2018 8 min read

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

Laura Ledbetter hugs her 5-year-old son Grayson at their 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.

Laura Ledbetter meets with the Times Free Press at her home on Tuesday, May 1, 2018 in Ooltewah, Tenn. Ledbetter's youngest son 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.

Five-year-old Grayson Ledbetter looks out of the window of 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.

Josh Ledbetter carries his 5-year-old son Grayson at their 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.

Laura Ledbetter helps tie her 5-year-old son Grayson's shoe at their 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.

Laura Ledbetter, left, looks on as her sons Grayson, 5, and Cooper, 9, show off their gymnastics moves at their 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.

Nine-year-old Cooper Ledbetter hugs his 5-year-old brother Grayson at their 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.

Five-year-old Grayson Ledbetter plays with a toy 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.

Laura Ledbetter smiles and laughs as she points at her 5-year-old son Grayson at their 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.

GLOVES UP FOR GRAYSON

When: Doors open at 6 p.m., and boxing starts at 7 p.m. SaturdayWhere: Chattanooga Convention CenterCost: Adult tickets are $20, age 18 and under are $10More 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.