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College Station family raises Brain AVM awareness

Kyler Lewis was diagnosed with a stage four Brain AVM in April
Published: Oct. 18, 2020 at 9:20 PM CDT
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COLLEGE STATION, Texas (KBTX) -The Lewis family is adjusting to a new normal after their son Kyler was diagnosed with a stage four brain arteriovenous malformation (AVM).

“We thought that Kyler was just a healthy, you know, happy normal teenager,” said Raylene Lewis, Kyler’s mom.

Raylene says Kyler’s first brain bleed happened in April. “He turned to me and asked how he got in the car and I was so confused by the question. What do you mean how did you get in the car? Then he told me he was feeling sick. I thought that’s very strange, he was perfectly normal two minutes ago,” said Raylene.

Kyler’s parents rushed him to Texas Children’s Hospital where they would learn about his AVM for the first time.

“We were told that Kyler had a mass, and that he was bleeding and that he needed emergency surgery,” said Raylene “What that means is it’s large and it’s surrounded by eloquent tissue and so his cannot be removed, it’s inoperable,” said Raylene.

In an effort to shrink the mass, Kyler is receiving Gamma Knife Radiation in California. “I hope it does shrink. I’m feeling side effects of the radiation so I kind of think maybe it’s doing something,” said Kyler.

“Obviously having surgery would be the best thing to do, but we don’t have that option so we’ll let the radiation take effect and we’ll see where it takes us,” said Kyle Lewi, Kyler’s dad.

In an effort to help spread awareness of the dangers of AVM, the family created a Cure 4 Kyler Facebook page.

“We were able to get to the hospital in such a good and timely manner, they were able to stop the Hydrocephalus, the swelling in Kyler’s brain, and so unlike most kids when this happens Kyler has recovered completely,” said Raylene.

“I like to reach out to other kids that had recently found out that they had the problem to let them know they’re okay and that I had gone through it, so they can go through it too,” said Kyler.

With help from the community, Kyler has raised more than $10,000 to go towards AVM research. Aggieland Outfitters has teamed up with Kyler to sell AVM awareness t-shirts with a portion of the profits going towards helping his cause.

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