12-year-old battles rare brain disease, gets the surgery he needs

OKLAHOMA CITY ( KFOR ) — A teenager getting ready to start high school is lucky to be alive after being diagnosed with Moyamoya back in 2022.

Moyamoya is a rare brain disease that reduces blood flow to the brain.

At just 12-years-old, while celebrating Memorial Day weekend, Taylor Neugent suffered an unexpected stroke.

He was taken to the emergency room at Oklahoma Children’s Hospital and what came next, no one expected.

“I remember that I asked him to smile and that I asked him to raise his arms and the left side of his face was drooping, but still, the last thing that I would have suspected was a stroke,” Randi Neugent, Taylor’s mother said.

Once his mother got him to the hospital, things took a turn for the worse.

‘When we got there, Taylor walked into the ER, like with some assistance, but it went downhill pretty fast,” Randi said. “After that, he started seizing and they had to sedate him to get any testing done. It was really scary.”

They learned that Taylor was diagnosed with the rare brain disease, Moyamoya.

“Those blood vessels start to narrow down, almost like you’re constructing on that highway and kind of restricting the amount of cars that can go through,” Dr. Michael Feldman, Director of Pediatric Vascular Neurosurgery at OU Children’s Hospital said. “What that does is it creates a demand for blood flow in those parts of the brain and eventually strokes.”

Only one in every one million children are diagnosed with this disease across the US.

“Taylor was having strokes and he would become very debilitated by them,” Dr. Andrew Jea, Chief of Pediatric Neurosurgery at OU Children’s Hospital said.

So, OU Children’s had to work quickly, performing surgeries to increase blood flow to the brain.

“Those other superficial blood vessels that go up through the scalp, through the side of the head, and we’ll reroute those arteries through little holes that we drill and actually leave those superficial blood vessels onto the brain itself and allow for that blood flow to get to the brain,” Dr. Feldman said.

As you can imagine, Taylor was scared after learning of everything going on.

“I heard a bunch of scary words, I don’t know about what I am hearing,” Taylor said. “I was telling myself, this could be very bad.”

Two years of surgeries later, Taylor is finally back to feeling like himself.

“Playing a bunch of video games,” Taylor said.

His mother is thankful for everything OU Children’s was able to do to help her boy.

“Having that done and seeing him thrive is just the greatest gift,” Randi said.

Taylor is feeling great and is getting ready to celebrate his 15th birthday. He is also about to start high school.

The doctors at OU Children’s say Taylor shouldn’t have to have any more surgeries moving forward.

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