(WKYT) – Watch WKYT Investigates’ full special, ‘DIPG Dilemma’ above.
State health officials have identified 10 cases of diffuse intrinsic pontine glioma, or DIPG, diagnosed in Eastern Kentucky since 2024. Kentucky typically sees two to three cases of the disease statewide per year.
The state is now investigating the increase with the CDC to determine whether environmental factors are behind it.
What is DIPG
DIPG stands for diffuse intrinsic pontine glioma. It is a rare and deadly pediatric brain cancer. With DIPG, the tumor grows within the brainstem.
Dr. Randaline Barnett, director of pediatric neurosurgery for UK HealthCare, said the tumor cells grow interspersed with normal cells in the brainstem.
Barnett said the tumor is inoperable because of its location and how it grows.
“You have tumor cells that grow within the normal tissue, and so there’s no way for us to go in and resect the tumor without resecting normal tissue,” said Dr. Barnett. “That particular area, that controls our ability to walk, our ability to talk, our ability to eat, our ability to swallow, our ability to breathe, our ability for our heart to function. There’s no way to preserve that while taking the tumor out.”
The median survival time after diagnosis is about 8 to 11 months, according to Barnett, meaning most children with DIPG die within a year of diagnosis.
“I think any type of cancer is absolutely terrible, but DIPG, I can say as a neurosurgeon and as a mom, it’s my worst fear,” said Dr. Barnett.
Barnett, who is from Eastern Kentucky, said she and two pediatric oncologists who focus on neuro-oncology at UK had concerns that they were seeing more cases of DIPG and other aggressive brain tumors in children than what they considered normal.
“We started discussing that with other clinicians and amongst ourselves, and we’ve also started interacting more with our researchers here at UK, and even going to the extent of now we’re discussing that with folks in our government to try to help as much as we can in battling this,” said Dr. Barnett.
Dr. Barnett told WKYT Investigates’ Samantha Valentino that more people learning about DIPG gives her hope that more funding will be provided for cancer research.
“Prior to the recent federal funding cuts, only 4% of cancer research funding was dedicated to pediatric cancer, and so we’ve already been at a huge loss there. We do worry that, with additional cuts to funding, that is going to slow progress even further,” said Dr. Barnett.
‘Concerning’ number of DIPG cases in Eastern Kentucky
WKYT Investigates first reported on the DIPG cases in Eastern Kentucky in May, after families in Corbin raised concerns that five children in their area had been diagnosed in recent years.
A parent, Andrew Pennington, created a petition asking the state to look into the cases, which drew more than 3,000 signatures.
RELATED: WKYT Investigates: Kentucky looking into rare pediatric brain cancer cases in Corbin area
When WKYT Investigates’ Samantha Valentino reached out to the state about the petition, they said they were looking into the concerns.
The Kentucky Department for Public Health later confirmed there had been 10 cases of DIPG in people under 21 in Eastern Kentucky since 2024. They called that number unusual and concerning, compared to the two to three cases the state usually sees annually across the entire state.
The 10 cases span eight counties. According to the state, there are three cases in Whitley County, and one case each in Carter, Greenup, Johnson, Laurel, Lincoln, Madison, and Morgan counties.
State investigation continues
WKYT requested an interview with a member of the state investigative team but was told they were unavailable.
However, the state did provide an update on the investigation. They say the Kentucky Department for Public Health and the Kentucky Cancer Registry have met regularly with the CDC over the past few months to discuss the cases.
The state has provided the CDC with information about the locations of the cases as well as data on past environmental and hazardous incidents in the region.
The Kentucky Department for Public Health has secured a $40,000 award through a Health and Human Services grant, which they say will be shared with the Whitley County Health Department and the Kentucky Cancer Registry.
The money will support case tracking efforts, community outreach, and the development of a case control study that will compare past cases to a demographically matched control group to identify possible associations or trends among those diagnosed with DIPG.
RELATED: WKYT Investigates: Kentucky secures federal grant to study Eastern Kentucky DIPG cases
The grant was obtained in August, and planning for the potential case study remains in its early stages.
Gov. Andy Beshear responds to cases
WKYT Investigates requested to sit down with Governor Andy Beshear to discuss the cases, but was told he was unavailable.
The Beshear administration says they have directed a record $45.5 million toward pediatric cancer research and family support since taking office and says they intend to continue that commitment.
In a statement, Beshear said, “There is no known environmental or hereditary cause for DIPG currently, which presents a significant challenge for teams working to identify a contributing cause for a rise in cases like we have seen in Eastern Kentucky.”
Beshear added, “As a dad, and as someone who came to know and admire David Turner Jr. and his family, I’m committed to supporting the families affected and am having my administration work to secure additional support from the federal government. Since I took office, we have directed a record $45.5 million toward pediatric cancer research and family support, and we will continue this commitment to support childhood cancer patients and their families as we fight to find a cure.”
Families share their stories
Bowen Pennington, Ayven Dennis and Destiny Miniard are among the 10 Eastern Kentucky children diagnosed with DIPG since 2024. Their families agreed to share their stories with WKYT Investigates to raise awareness about the disease.
Destiny Miniard, of Laurel County, was 10 days from her ninth birthday in January 2025 when her family noticed she had started walking oddly. A doctor diagnosed her with DIPG the next morning. Doctors told the family Destiny had nine months to a year to live and suggested they go home and make memories.
WATCH DESTINY’S STORY HERE: WKYT Investigates: Laurel County girl defies odds as she fights DIPG
“They said if we didn’t ever radiate, we had less than six months. That’s the only reason we radiated,” Marsha Miniard, Destiny’s mother, said.
The Miniards say radiation stopped the tumor from growing but did not shrink it. The family added a “no-harm protocol” that included ivermectin, fenbendazole and full-extract medical cannabis oil.
The American Cancer Society says Ivermectin’s cancer-fighting claims are based only on early lab and animal studies, and more research is needed. The FDA has not approved Fenbendazole for any human use; it is intended only for use in animals. The American Cancer Society says studies show cannabis does not stop or slow the growth of cancer cells, but people with certain symptoms of cancer might benefit from its use.
The Miniards said Destiny’s tumor shrank on the protocol.
“First time it was 21% shrinkage,” Marsha Miniard said.
“The next time it was more than that,” John Miniard said.
“It was like 30-something,” Marsha Miniard said.
By that point, Destiny had already outlived the 9 months to a year doctors had given her, and her parents started noticing changes.
“We were seeing my daughter run, jump, climb, playing on everything up till July,” Marsha Miniard said.
In July, doctors told the Miniards Destiny’s tumor had doubled in size. Since then, the family has watched Destiny decline.
“She’s sleeping about 18 hours out of the day,” John Miniard said.
Her parents say doctors have told them she may have days left. The family says it has not stopped fighting, including for other families.
“I’m constantly on the phone with these families that are begging for help. And we’re seeing them die,” Marsha Miniard said.
Four months after Destiny’s diagnosis, Ashley Early’s son, Ayven Dennis, a 6-year-old in Whitley County, began struggling. His eye had turned inward, and he began having trouble climbing stairs. Doctors in Knoxville found a mass in his brainstem and diagnosed DIPG.
WATCH AYVEN’S STORY HERE: WKYT Investigates: Williamsburg mom shares son’s DIPG battle as Southeastern Kentucky cases reach 10
“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.
“Before he lost the ability to speak, he asked me if he was going to die, and of course I said, ‘No,’ and then he said he didn’t want to die,” Early said.
Ayven died March 5, 2026, nine months after his diagnosis.
Bowen Pennington, of Lincoln County, was diagnosed in December, just before his third birthday. The Penningtons chose not to pursue radiation.
WATCH BOWEN’S STORY HERE: WKYT Investigates: Lincoln County toddler continues fight against rare brain cancer as Eastern Kentucky DIPG cases raise concern
“It was definitely a lot of praying. Not an easy decision, but something that just didn’t sit right in the gut,” Ryan Pennington, Bowen’s father, said.
Cierra Pennington, Bowen’s mother, said the family monitors him constantly for changes.
“His tumor’s about the size of a brown egg. For a toddler’s head, that’s huge,” she said.
At Bowen’s most recent scan, doctors flagged a new spot about the size of a pea. The family is waiting until October for further answers.
In the meantime, Bowen has started Modeyso, an FDA-approved treatment for diffuse midline glioma including DIPG, as part of a clinical trial.
Cierra Pennington said she began to connect with other Eastern Kentucky families after learning of other DIPG cases in the region, including Destiny Miniard’s.
“I started kind of questioning why were all these kids within an hour to two hours of us all getting the same cancer,” she said.
Marsha Miniard said she believes the number of cases is not coincidental.
“I want to call it an epidemic. It’s not just a chance. My kid did not just wake up one day and had this. Something caused it,” she said.
Congressman says reporting prompted him to act
U.S. Rep. Hal Rogers, R-Ky., said WKYT’s reporting prompted him to act on the cases, most of which are in his district.
He first addressed the cases publicly in May, after WKYT’s initial report, calling on the National Institutes of Health and researchers at the University of Kentucky’s Markey Cancer Center to study them. Rogers said that study is ongoing.
“There’s a lot of people that’s caring about this issue and these young people and they deserve everything that we can get for them. That’s why I’ve asked CDC and the other agencies to speed it up to get us some answers,” Rogers said.
Ned Pillersdorf, the Democrat looking to unseat Rogers in November, told WKYT he also wants to see answers.
He sent WKYT the following statement:
“While the outbreak is more than alarming, the reality is that the Republican administration has slashed medical research at unprecedented levels, including massive cuts to the National Institutes of Health.
I certainly agree that we should request assistance, but the reality with the massive budget cuts the National Institutes of Health is so depleted rightfully concerned that they may not be able to assist.
If elected to Congress, I will speak out against the shameful slashing of medical research, something Hal Rogers refuses to do.”
When asked about federal cuts to cancer research, Rogers pointed to language he secured within the LLHS Appropriations Act of 2027 to prioritize childhood cancer research with federal support.
“Those parents of those young people, they’re in good hands. Your stories are having an effect; it is on me. We have a whole government that’s plugged in now, and we will see that the money gets to the right places,” Rogers said.
Cincinnati family built international registry now central to investigation
Investigators looking into the Eastern Kentucky cases have turned to data from the International DIPG/DMG Registry and Repository, built with the help of an Ohio family whose daughter died of DIPG nearly 20 years ago.
Keith Desserich’s daughter, Elena, was diagnosed with DIPG in 2006 at age 6. Doctors told the family she had about five months to live.
“She said that she has a type of tumor called diffuse intrinsic pontine glioblastoma, or a brainstem cancer, because we didn’t even have a real name for it at this point. And the next words are the ones that haunted me more than anything else, because she said, ‘This is the cancer that we’re most scared of,’” Desserich said.
The family shared their experience in a blog that later became a New York Times bestselling book. One post, in which Desserich wrote about how cancer research funding prioritized diseases with the most diagnoses rather than the most promising science, ended with the phrase “the cure starts now.” Checks made out to a charity by that name, which did not yet exist, began arriving at the family’s business. The Desserichs went on to found The Cure Starts Now, a foundation dedicated to finding a home run cure for cancer.
WATCH: WKYT Investigates: Family fights to find cure after losing daughter to DIPG
In 2011, Desserich said he identified a gap in existing cancer data: registries collected only the information needed for individual clinical trials, without enough data to establish broader patterns.
The Desserich family helped build the International DIPG/DMG Registry and Repository, now a partnership of 129 hospitals in nearly 30 countries. It collects genetic, demographic, tissue, and radiological data and is free for families to join. Families who enroll can also request a consultation with a doctor from the registry team at no cost.
Desserich said the registry began receiving inquiries from concerned Eastern Kentucky parents, and later from the state, about the cases.
“Then the question is, do you have anything that’s in these geographic regions? Then the answer to it is that we don’t have all the data that we need,” Desserich said.
In order to use the registry to help find answers, Desserich says they need more data.
“We have to walk into it and say, ‘Let’s get to the bottom of it. Let’s get the data.’ It’s the only thing that’s going to get rid of that fear. It’s the only thing that’s going to either solve this or make us feel better. But we need your help,” he said.
Families affected by DIPG can enroll in the International DIPG/DMG Registry at no cost atdipgregistry.org.