WKYT) – Ten children in Eastern Kentucky have been diagnosed with diffuse intrinsic pontine glioma (DIPG) since 2024 — a rare and aggressive pediatric brain cancer that typically produces only two to three cases statewide in an entire year.
The state confirmed the case count after parents brought their concerns to WKYT Investigates.
The Kentucky Department for Public Health said it has met multiple times with the Centers for Disease Control and Prevention, its Agency for Toxic Substances and Disease Registry, and other agencies to determine whether any environmental factors may be associated with the increase.
KDPH says the CDC has agreed to analyze data across states in hopes of identifying any possible connections among DIPG cases, and the state has shared the necessary data for that purpose. The investigation is ongoing.
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What is DIPG?
DIPG is a brain tumor that strikes children almost exclusively. Between 150 and 350 patients are diagnosed across the country each year. The tumor forms within the pons — the part of the brainstem connecting the brain to the spinal cord — where it damages critical nerves as it grows.
Gov. Andy Beshear addressed the Eastern Kentucky cases in a statement, saying, “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 that he is committed to supporting affected families and is working to secure additional federal support. He said his administration has directed a record $45.5 million toward pediatric cancer research and family support since he took office.
A family’s fight becomes a foundation
Keith Desserich knows the disease better than most. His daughter Elena was six years old when she was diagnosed with DIPG in 2006.
“She said that she has a type of tumor called diffuse intrinsic pontine glioblastoma, or a brain stem cancer, because we didn’t even have a real name for it at this point,” Desserich said. “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.’”
Doctors said there was nothing they could do and that Elena had about five months to live. As the tumor progressed, Elena lost her ability to talk, then her vision, then her hearing, then the use of her arm.
“Every day, you put your child to bed, and you wonder what they’re going to lose the next day,” Desserich said. “Because it’s going to be something. And you hope, and this is the kind of the sad part, you hope it’s their voice, you hope it’s their ability to walk because it could be their ability to breathe, it could be their ability to eat. It could be their heart.”
135 days and the notes left behind
The Desserichs calculated the days they had left with Elena: 135. They spent every one preserving memories — not just for themselves, but for Elena’s then-three-year-old sister, Grace.
“We called these notes ‘notes left behind,’” Desserich said. “What they were is they were memories — they were memories about the friendship that these two sisters held between them. They were about the love that they had for each other, and they were about what Elena taught us to do.”
What the family did not know until after Elena’s passing was that she had been doing the same thing for them — leaving handwritten notes hidden in closets and boxes throughout the house.
“We would open up a closet, or we would open up a box that was in the corner, and we would find — the entire top of it would be covered over in these notes that Elena wrote for us,” Desserich said. “They would say something to the extent of I love you, Mom, Dad, Grace.”
Desserich said he believes Elena knew she was not getting better.
“We told her it was a bump in your head and we’re working as hard as we can to beat it,” he said. “But she knew that we weren’t able to solve it, and she knew what was going to be happening next. And so I remember — and I still have it — a note from her that she said, ‘Dad, I’m sorry. I’m sick.’ There’s nothing to apologize for. It’s not her fault. It’s just — it’s a very, very tough type of cancer.”
‘The cure starts now’
The Desserichs shared their notes on a blog, so their family could read them.
One night, Desserich wrote something different. It wasn’t a memory. It was anger. He wrote about how he believed the world was going about curing cancer wrong, by focusing resources based on diagnosis volume rather than scientific potential.
“The last words of that particular journal were ‘the cure starts now,’” he said.
He said he did not expect anyone to read it. Two weeks later, checks arrived at the family’s business made out to The Cure Starts Now — a charity that did not yet exist.
The blog later became a book that reached the New York Times bestseller list. Proceeds went back into the foundation.
Since then, Keith says they’ve funded nearly 200 projects and raised about $50 million for research and support worldwide.
The registry built by parents, for parents
In 2011, Desserich identified a gap in how DIPG data was being collected. Existing registries, he said, were incomplete.
“They would only collect just the data that they could afford to collect underneath the clinical trial,” he said. “They wouldn’t collect necessarily the genetic history. They wouldn’t collect necessarily maybe where the families lived. They weren’t collecting sometimes a full tissue sample of it. They were just collecting what they needed.”
Without complete data, he said, research stalled.
“Let’s say we found something that was interesting; we couldn’t tell you why it happened,” Desserich said. “We couldn’t take it to the next line. It wasn’t linked, and it wasn’t organic.”
The Desserichs worked to build the International DIPG/DMG Registry and Repository — now a partnership of 129 hospitals in nearly 30 countries. It collects genetics, demographics, tissue samples, and radiological reports. Enrollment is free.
“The registry was built by parents, for parents,” Desserich said. “It’s designed to be friendly. It’s designed to be easy. And really all it takes is that a family can even go to dipgregistry.org . And they just have to sign up and say, ‘I want to participate in it.’ It’s really that simple.”
Once enrolled, the registry contacts the family’s hospital to collect records. Families who request it can also receive a free consultation with a physician from the registry team.
“It doesn’t cost a thing, but it can help out to these parents that are in the fight today,” Desserich said.
The registry goes further than data collection.
“Once those records are in the system, if they ask, they can actually get a consult with a member of a doctor from that registry team who can reach out to you and say, here’s some options, here’s some things that you can look at with it. And it’s free. Doesn’t cost a thing, but it can help out to these parents that are in the fight today,” Desserich said.
Registry now central to Eastern Kentucky investigation
The registry received inquiries first from concerned parents in Eastern Kentucky, then from the state.
“The registry has started to look at how many cases are in the state of Kentucky,” Desserich said.
The registry holds fewer than 50 Kentucky cases going back to the early 2000s — a figure Desserich described as significant but limited for nearly 25 years of data.
He said the registry does not yet have all the data it needs from the affected geographic region, in part because families and hospitals must opt in to participate.
“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,” he said.
Desserich said data is the path forward for families with questions.
“The answer to fear and the answer to the questions that are being asked is really knowledge,” he said. “That’s what we’re trying to get to. That’s what the registry is about. Being able to get those patients that we know so that we can be able to get to the bottom of this and eliminate that fear.”
He believes they can get answers, but first they need the data.
“We have to walk into it and say, ‘Let’s get to the bottom of it. Let’s get the data,’” Desserich said. “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.”
Families affected by DIPG can enroll in the International DIPG/DMG Registry at no cost at dipgregistry.org .