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Ooltewah boy makes strides against extremely rare disease, family hosts fundraising event

Grayson Ledbetter has Alexander disease, a rare neurological disorder that essentially destroys white brain matter. He is slowly losing the ability to walk, talk, and eat. (Image: WTVC)

UPDATE (July 1st):

Grayson had a 4th birthday party celebration over the weekend. We have added photos of the event to our photo gallery.


PREVIOUSLY:

Back in November, we introduced you to a 5-year-old boy battling a disease so rare only 100 children in the world have it.

Now, we're checking back in on Grayson Ledbetter, who has made huge strides in the last six months.

Grayson has Alexander disease, a rare neurological disorder that essentially destroys white brain matter. He is slowly losing the ability to walk, talk, and eat.

On Saturday, Grayson is graduating from Pre-K, but that's not all.

We were there for Hippo-therapy with Grayson. When he first started, he sat slumped over in the saddle.

That was months ago. Now, he's made significant progress. His mother, Laura, says this therapy helps build Grayson’s core, which for patients with Alexander disease, is pretty much non-existent.

Because the disease is so rare, there's little to no federal funding for research.

Grayson's family is trying to fix that with the non-profit organization Grayson's Ladder.

The Ledbetter family is hosting a boxing tournament Saturday night at the Convention Center called Gloves Up For Grayson.

The money raised goes to help pay for clinical trials. Tickets are still available - you can get them here. Doors open at 6 o'clock.

You can learn more about Alexander disease and Grayson's journey at the website here.

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