WKYT Investigates: Williamsburg mom shares son’s DIPG battle as Southeastern Kentucky cases reach 10

WILLIAMSBURG, Ky. (WKYT) - Ten children in Southeastern Kentucky have been diagnosed with diffuse intrinsic pontine glioma (DIPG) since 2024, according to state health officials.

Typically, only two to three cases of the rare and aggressive pediatric brain cancer appear statewide in an entire year.

The state has called the increase unusual and concerning and says it is reviewing possible next steps.

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A mother’s story

Ashley Early of Williamsburg is the mother of one of those ten children. Her son, Ayven, was six years old when he was diagnosed with DIPG in May 2025.

Before his diagnosis, Ayven showed no signs of illness. Then, one weekend, as Ashley sent him to his father’s house, she noticed one of Ayven’s eyes turning inward.

“His older brother had had a lazy eye when he was younger, and I thought it was kind of the same thing,” Early said.

By Monday, Ayven struggled to climb the steps at his father’s home. The family rushed to the emergency room in Knoxville, where doctors delivered the diagnosis no parent wants to hear.

“When he told me the mass was in his brain stem, I kind of lost it — because I knew that was bad, no matter what,” Early said.

The diagnosis

DIPG — diffuse intrinsic pontine glioma — is one of the rarest and deadliest pediatric brain cancers. There are only about 300 diagnoses across the country each year, with a two-year survival rate of just 10 percent.

Early said she had researched brain tumors while waiting for Ayven’s results and had come across DIPG.

“The percentages were so small. I was like, there’s no way it’s going to be that. So when they did tell us it was DIPG — I knew what the odds were. And that was pretty devastating,” she said.

Treatment and decline

“Really the only treatment option is radiation — and it’s palliative at best. If we want anything beyond that, it would be a clinical trial,” Early said.

After radiation, Ayven developed fluid on his brain. Doctors placed a VP shunt, which resolved his symptoms but ruled him out of several clinical trials.

In September 2025, the family traveled to Chicago for a heat shock protein vaccine trial. Ayven remained in the trial through January 2026 but continued to decline.

“He went from perfectly healthy in May to couldn’t walk on his own in September. January, he could no longer swallow. In the beginning of February, he lost the ability to speak. It was pretty horrific,” Early said.

Ayven entered hospice care at just six years old. He died on March 5, 2026 — less than nine months after his diagnosis.

Federal funding cuts and the state’s investigation

The state says it is exploring research opportunities and seeking support from the CDC. However, Gov. Andy Beshear’s administration says obtaining that federal help has been “more difficult due to significant funding cuts under the current administration.”

The Trump administration has cut grants to the National Institutes of Health and the National Cancer Institute. It also phased out funding for the Pediatric Brain Tumor Consortium — a network of hospitals and research centers created to study primary brain tumors in children, including DIPG. Without that funding, the network ceased independent operations in March 2026. President Trump said the cuts were part of a broader effort to reduce federal spending, targeting “indirect costs.”

In response to previous reporting on the southeastern Kentucky DIPG cases, Congressman Hal Rogers urged the NIH to conduct a thorough study into the number of cases in his district.

His office tells WKYT Investigates Congressman Rogers has “remained engaged in conversations about the study of DIPG cases in southeastern Kentucky.”

Rogers recently secured language within the Labor, Health and Human Services, Education and Related Agencies (LHHS) Appropriations Act of 2027 to prioritize childhood cancer research with federal support.

A mother’s call for answers

Early said she hopes sharing Ayven’s story will raise awareness and push officials to determine whether something in the community is causing the increase in DIPG cases.

“When you take into account that every one of these children will die — if you put yourself in the shoes of that family — you would understand why there needs to be funding, why there needs to be more research, and why we should be backing every clinical trial there is for this. Because it is absolutely devastating,” she said.