Climbing for a cure: family of Ooltewah boy with rare disease asks for community's help

Grayson Ledbetter has Alexander Disease, a regressive brain disease affecting fewer than 100 people across the world. (Image: WTVC)

When Grayson Ledbetter was just one year old, his parents noticed signs of developmental delays.

However, it wasn't until he had a seizure this year that they knew how valuable their time with Grayson really is.

The five year old has Alexander Disease, a rare neurological disorder that essentially destroys his white brain matter.

Grayson is slowly losing the ability to walk, talk, and eat.

"Doctors told us that eventually it is a terminal disease," said his mom Laura.

There are only about 100 children in the world with Alexander Disease. Grayson is the only child in the Chattanooga area diagnosed with the disorder.

Laura and her husband Josh Ledbetter are afraid of the future.

"'Is that a sign of regression? Are we headed towards him not being able to wake up? To breathe?'" said Josh. "I think that goes through our minds when we're not around him."

While they know what will gradually happen to their son, they've avoided telling Grayson to protect him.

"We feel bad for him. And I don't want to say we feel pity but we wish that we could just take it from him, you know?" Laura said.

Since they can't take it away, they're now taking steps to make it better with "Grayson's Ladder", a component fund of the Community Foundation of Greater Chattanooga.

Research for rare diseases like Grayson's receives very little government funding.

The Ledbetters want to raise awareness and money to give their little boy a fighting chance.

"Without that, Grayson will not have a treatment in his lifetime so there's a real sense of urgency," said Laura.

Right now, Grayson is doing well.

His doctors want him as strong as possible.

"She thinks that he could have possibly a decade of life, but she doesn't know what that decade will look like for him," said Laura.

In the meantime, his parents are trying to stay strong for him.

"Today is a good day. We're just going to focus on that," said Laura. "Today is good for him."

Every donation to Grayson's Ladder will go directly to support research of Alexander Disease.

To make a donation and help kids like Grayson, go to the website here.

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