WHITLEY COUNTY, Ky. — A 5-year-old Kentucky boy who died in March from a rare and inoperable brain tumor is now part of a growing cluster of cases under investigation by state, federal, and local health officials.
Ayven Dennis was diagnosed with diffuse intrinsic pontine glioma, or DIPG, in May 2025 after his mother noticed one of his eyes turning inward. Soon after, his symptoms worsened.
“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.
Doctors confirmed the diagnosis after performing an MRI scan of Ayven’s brain. DIPG is an aggressive cancer that develops on the brain stem and cannot be removed through surgery. Physicians gave Ayven an estimated 9 to 11 months to live.
“We were told it would be a good idea to make memories a priority,” Early said.
Just weeks after learning of the diagnosis, Ayven started one of 30 radiation treatments. He underwent radiation five days a week while under general anesthesia. But the cancer advanced too quickly for the treatments to reduce 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, Ayven’s family joined a Chicago-based clinical trial designed specifically for DIPG patients, hoping it would help prolong his life. The treatment did not work, and by February 2026, Ayven entered hospice care. He died a 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 remembered her son as a happy and energetic child who loved dancing.
“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. Typically, Kentucky records only two to three DIPG cases each year.
State officials, the CDC, and local health departments are continuing to investigate the unusual cluster of cases.
Early said she appreciates the growing awareness surrounding the issue.
“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.
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