Ooltewah Elementary Honors Student With Rare Brain Disease

OOLTEWAH, Tenn. (WDEF)- The scene at Ooltewah Elementary School was blue on Friday morning.

But the mood of Grayson Ledbetter was anything but blue.

The ten year old Ooltewah Elementary student is fighting the battle of a lifetime. Grayson is only one of less than 100 people around the world with Alexander’s Disease, which is a regressive brain disease of white matter in the brain. It affects his ability to walk and talk, causing him to lose those abilities over time. For Grayson’s family, this diagnosis was daunting as there’s not many people who know about the disease.

“Just to find support from other families or even physicians that have ever taken care of patients with Alexander’s Disease is difficult.”, Laura Ledbetter, Grayson’s mother said. “We have to travel out of town, we actually travel to Philadelphia (for care).”

This is why raising awareness of Alexander’s Disease and other forms of Leukodystrophy is so important for her and her’s family’s organization, Grayson’s Ladder.

Fortunately for Grayson, he enjoys his time at Ooltewah Elementary and the connections that he makes with his friends and teachers.

Principal Bethany Reynolds emphasized that, “We have a fantastic staff here at Ooltewah Elementary School. Grayson has tremendous support around him. We make intentional plans. But ultimately, it’s about building a culture of care, and he brings so much to our school. And our students respond so well, and they’re so loving, and caring. We have such a great positive culture here.”

Most importantly for Laura Ledbetter, Grayson’s smile is what keeps a beacon of hope alive despite his diagnosis.

“What he’s battling is really, really big. It’s really tough on him. But despite that, that smile on his face is always there. I think that’s the thing other people see and feel from him. That’s he just full of love and joy. I think we can all probably learn from him. Even though we are having a rough time, we can keep that smile on our faces.”

To learn more about Grayson’s Ladder and to help out with finding a cure for Alexander’s Disease, visit their website at https://graysonsladder.org/

 

 

 

Categories: Featured, Hamilton County, Local News, Ooltewah