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'Don't stop talking about it': Mom speaks out after 5-year-old son dies from DIPG

Fighting for awareness of DIPG
Whitley County 5-year-old dies 10 months after DIPG diagnoses
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WHITLEY COUNTY, Ky. (LEX18) — A 5-year-old Kentucky boy died in March from a rare, inoperable brain tumor — and his death is part of a cluster of cases that has prompted a joint investigation by state, federal, and local health officials.

Ayven Dennis was diagnosed with diffuse intrinsic pontine glioma, known as DIPG, in May 2025 after his mother noticed his eye was moving inward. Those symptoms soon progressed.

"He was having trouble going up the stairs, which is super unusual. Normally he can run right up them. So we, once I figured out what's going on, I said this is something big. So we went to the ER," his mother, Ashley Early, said.

An MRI scan of Ayven's brain confirmed the diagnosis. DIPG is an aggressive tumor that grows on the brain stem and cannot be surgically removed. Ayven was given 9 to 11 months to live.

"We were told it would be a good idea to make memories a priority," Early said.

Weeks after his diagnosis, Ayven began one of 30 rounds of radiation, undergoing the treatment five days a week under general anesthesia. But the cancer progressed too quickly for the radiation to shrink the tumor.

"He just declined very rapidly. We finished radiation at the very end of July, and by the end of August he was no longer able to walk on his own," Early said.

In September 2025, the family entered a clinical trial in Chicago specifically for DIPG, hoping it would extend Ayven's survival. The trial was not effective, and by February 2026, Ayven was placed into hospice care. He died one month later on March 5, 2026.

"Everyday is so hard you know. It's hard to go through life when every moment in your mind is all you think about. Sometimes I have memories and they make me laugh. Watching videos of him dance and stuff it makes me laugh. But most of the time it's sadness and you know a lot of anger because we don't have any answers. We don't know what causes it, we don't know how to treat it," Early said.

Early described her son as a joyful, energetic child who loved to dance.

"He was funny. He was a funny guy. Always joking around," Early said.

According to the CDC, Ayven is one of 10 children diagnosed with DIPG in southeastern Kentucky since 2024. Kentucky typically sees only 2 to 3 DIPG cases per year.

The state, the CDC, and local health departments say they are working together to investigate the cluster further.

Early said she is grateful the issue is getting attention.

"I'm so glad that they're talking about it and just realize how precious time is. Just keep talking about it. Don't stop talking about it," Early said.

LEX18 has reported on other children in Southeastern Kentucky diagnosed with DIPG:, including Destiny Miniard's story, Millee Kate Daugherty's story, and Bowen Pennington's story.