By Sarah Ladd, Kentucky Lantern · May 18, 2026 Josh and Shannon Ritchie with their sons, Jaiden, 15, (holding a photo of Colton) and Liam, 5, on May 12, 2026. (Kentucky Lantern photo by Sarah Ladd) Shannon Ritchie doesn’t remember the exact day she heard her son, Colton, speak for the last ti me.  The brain tumor took everything: His ability to walk, to swallow, to talk. Eventually, it took his life.  Colton Ritchie was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) in 2016 at age five and lived 16 months before passing away on Valentine’s Day.  “I look back at videos and stuff that we took,” said Ritchie, 39, of Jackson. “I can remember (his voice) from watching those.”  Turning her pain into advocacy, Ritchie helps raise awareness about DIPG, raise funds for a cure, support families going through treatment and even gives stuffed bears to the Golisano Children’s Hospital every year on Valentine’s Day, in honor of Colton. “That just … helps me turn a sad day into a positive day, because I know we did something good,” Ritchie said. “Colton loved nothing more when he was in the hospital than to get a new plushie or a new bear.” State investigation  Since 2018, the year Colton died, there have been 39 cases of DIPG diagnosed in the commonwealth, according to Eric Durbin, the director of the Kentucky Cancer Registry.  Eric B. Durbin (Photo provided) Of those, 13 were in the Appalachian region. In 2024, there were three active cases. In 2025, there were six new cases, Durbin said, mostly in children (defined as being under the age of 20). One new case was confirmed so far in 2026, he said.  The Kentucky Cancer Registry, state and local health departments and other organizations are investigating after locals in Southeastern Kentucky raised concerns about DIPG in their region.  DIPG is a rare and incurable cancer mainly found in children around younger than 10, though it’s been found in Kentucky adults. A Kentucky patient was diagnosed at age 72 in 2018, Durbin said, and one of the recent diagnoses was in a person 20 years old.  Patients who have DIPG may have trouble walking, weakness or drooping in the face, blurred vision and other eye problems and other issues. Survival at two years is about 10%, according to DIPG.org, and 2% at five years.  The ongoing state investigation, first reported by the Kentucky Lantern on May 5, indicates the newest cases do not constitute a cancer cluster, according to Durbin.  Recent cases have been spread out in Barron, Johnson, Lincoln, Whitley, Madison, Laurel and Morgan Counties, Durbin said. The Lantern previously reported local health departments in Whitley, Laurel and Knox were collaborating with the state in the investigation.  Still, the cases have parents in the area on heightened alert.  Ritchie, who has spent the almost decade since losing her son raising money for a DIPG cure, finds the cases concerning.  “When Colton was diagnosed, there was like one other kid (with DIPG) in the state that I knew of,” she said. “Obviously it’s alarming when you see an increase in numbers in a small area, because you’re talking about children that are exposed to the same things and stuff like that. It’s a lot.”   Not a cluster — but still a concern  The cases — while they represent an increase that concerns him — are spread out enough that they do not appear to be a cluster at this time, said Durbin with the cancer registry.  “Maybe we can alleviate panic. That doesn’t mean that it’s not a grave concern,” Durbin said. “And we are indeed very, very concerned about this. You never want to see the rates of any childhood cancer level in a brain tumor increase. And so that’s definitely cause for concern, and we share that concern.”  The DIPG Registry shows 895 active members in the United States, which is higher than any other nation in the registry and makes up more than 60% of all cases registered. Canada, the next highest, has 233 registrants.  Every other country in the registry has fewer than 100 cases. Female patients account for a majority of cases around the world (53%). Cases could be higher than the registry reflects; it is elective.  Kentucky is already one of the worst states for cancer in general, and Appalachia tends to fare worse, said Durbin, an epidemiologist.  “Unfortunately for Kentucky, the very highest rates of cancer typically occur in the Appalachian region,” he said. “That’s how it’s been for many, many years.”  Historically, smoking has driven those numbers, he said. “The burden continues to be incredibly high compared to other parts of the country.”  Dr. Dana Tlais, a researcher and pediatric oncologist at St. Jude Children’s Research Hospital. (Photo provided) Dr. Dana Tlais, a researcher and pediatric oncologist at St. Jude Children’s Research Hospital, said even advancements in robot-assisted surgery aren’t enough to surgically remove this highly aggressive (fast growing) DIPG tumor, which is located in a part of the brainstem called the pons.  “It is a location that controls the way we breathe, the way our heart beats. It controls our speech, the way we swallow, the way we move,” she said. “So nobody can truly live without that.”  And to fully remove DIPG, “you have to completely remove that area of the brain,” she said.  The standard of care right now for DIPG — the only thing proven to slow the tumor’s growth — is radiation therapy over the course of about six weeks, said Tlais, an instructor in the Department of Oncology Division of Neuro-Oncology.  “Clearly, the standard of care is not sufficient, and we need to think of other ways to be able to fight this tumor and to hopefully one day be able to cure this tumor,” said Tlais.  One promising area of research, she said, involves using a patient’s own T-cells.  “You take the kid’s own T cells — so, their immune cells, their infection fighting cells — and you engineer them in a way to have them recognize an antigen or a marker expressed by the tumor cells, and then you give those cells back,” she explained. “And so you’re kind of harnessing the kid’s own immunity to fight the kid’s cancer.”  That research is still in clinical trials, but it’s “one of the most promising therapies” being studied right now, Tlais said.  “DIPG is a monster of a disease,” Tlais said. “Even though I deal with it day in, day out, I still cannot imagine how it must feel on the parents’ side … and how the child must feel as they go through this. I’m hopeful that with research and with learning and with this wonderful patient population — parents are so caring and they want to give back and they want to help other kids in the future — I’m hopeful that we can change things in the future.”  ‘It’s something that we won’t ignore’  Gov. Andy Beshear, First Lady Britainy Beshear and Winnie Beshear on May 12, 2026, the day the governor signed annual proclamations recognizing Kentuckians diagnosed with brain tumors. (Kentucky Lantern photo by Sarah Ladd) Each year, Gov. Andy Beshear recognizes May as Brain Tumor Awareness Month, May 17 as DIPG Awareness Day and May 21 as David Turner Jr. Ice Cream Day, in honor of a 9-year-old Kentucky boy who died from DIPG.  When David Jr. first met Beshear, the governor asked him what he would do if he was governor. “He’s like, ‘I’d make a National Ice Cream Day,’” his mother, Liz Turner, said, leading Beshear to create the annual David Turner Jr. Ice Cream Day.  David Jr.’s favorite kind of ice cream was orange vanilla swirl, Turner said.  On May 12, Beshear signed several proclamations honoring Kentuckians diagnosed with DIPG and other brain tumors. Speaking in Frankfort, he said raising awareness about the disease is key to finding a cure.  Meanwhile, the Kentucky General Assembly allocated $14 million toward pediatric cancer research over the next two years in its 2026 state budget.  “Our kids deserve as much as it takes,” Beshear said. “There shouldn’t be a limit on trying to find that next cure, to find that next treatment so that no parent, no family, is ever told that there’s nothing else that we can do.”  Liz Turner and Gov. Andy Beshear on May 12, 2026. On this day the governor signed anual proclamations recognizing Kentuckians diagnosed with brain tumors. (Kentucky Lantern photo by Sarah Ladd) Turner, who is the board president with the Kentucky Pediatric Cancer Research Trust Fund, said the money is distributed through state contracts to places like UofL Health, Norton Children’s, UK Healthcare and Markey Cancer Center.  She wants Eastern Kentucky families to know “they’re not alone,” she said: “Continue to use your voice and continue to show up and come with us, join us and share your story, because more people need to be aware so that we can have more research and more funding.”  She also helps keep families connected and supported.  “I know when my son was diagnosed, I remember them telling me there was nothing I did, I couldn’t have done anything, and nothing I did that caused him to have cancer,” Turner said. “And I remember looking and telling them ‘I’m his mama, I made him.’”  Tlais, the oncologist, said catching DIPG earlier doesn’t change the prognosis.  Meanwhile, Beshear told the Lantern that Kentucky will seek help from the Centers for Disease Control and Prevention, which “has a significant amount of experience and resources.”  “We just started looking at this and so we don’t quite know what those full needs might be,” he said. “There’s nothing that you can point out right at the start, but the number is too high. It’s something that we won’t ignore.”  Team Colton  Colton died in 2018 on Valentine’s Day after a 16-month battle with DIPG. He loved Halloween and dressing up as villains. In this photo, he holds his Joker radiation mask outside the UK Markey Center, where he was treated. (Photo provided) For Colton, DIPG seemed to come “out of nowhere,” Ritchie said. “He had complained the previous weekend of a headache off and on, but my children were notorious for getting strep throat, and I thought, ‘well, he’s probably getting strep.’”  Days later, he “staggered through the hallway” when he woke up for school. She thought maybe he was half asleep.  That same day, Ritchie got a call from the school nurse: “She was like, ‘Shannon, you’re gonna think I’m crazy, but it’s almost like he’s had a stroke,’” Ritchie remembered.  Colton died in 2018 on Valentine’s Day after a 16-month battle with DIPG. He loved Halloween and dressing up as villains. He enjoyed playing Super Mario Cart and watching YouTube. (Photo provided) In the bathroom, he couldn’t raise his left arm to reach the soap dispenser. They went to a doctor locally, who recommended they immediately go to Lexington for help from UK Healthcare. There, a CT scan showed a mass in his brain. An MRI showed it was DIPG.  Ritchie clearly remembers being in a room with the doctor who dropped the “bombshell” news: “He’s got nine to 12 months to live.”  “Your first question is, ‘what caused this? Did I cause this? Did I do something wrong?’” she said. “There has to be a cause.”  Ritchie’s mind went to Jaiden, Colton’s twin, who is now 15: “They were exposed to the same things. They ate the same things. Everything in their life has been the same. Neither one of them have done anything different. So, why Colton and not Jaiden? That’s a question to ask, and so that makes you think, ‘Okay, well, is there an environmental cause?’”   The difficult answer is that scientists do not know. They still can’t point to a cause for DIPG — and they have not found a connection between water or pesticides and the disease in Kentucky, Durbin said.  “One thing we can and we should take a look at, to the extent that we can, is the molecular makeup of the tumors,” Durbin said. “I think analyzing those data will be really important. And we can look for different biomarkers that, perhaps, could be exhibited in some of these tumors.”  ‘He would have loved it’  Colton died in 2018 on Valentine’s Day after a 16-month battle with DIPG. He loved Halloween and dressing up as villains. In this photo, he is dressed up as Heath Ledger’s Joker character. (Photo provided) Colton Ritchie adored Halloween, especially because he got to dress as the villains he loved. His favorite was Heath Ledger’s Joker, whom he dressed as for at least three years, his mom recalled.  “He didn’t like Batman. He loved the Joker,” Ritchie said. “One of his last Halloweens, he was the Joker, and we were wheeling him around in the wheelchair.”   In honor of his affinity for the spooky season, the Team Colton DIPG Foundation hosts a Halloween festival fundraiser with trunk or treat, rides and costumes.  “He would have loved it,” Ritchie said.  The money her nonprofit foundation raises through this and other efforts throughout the year goes toward research for a DIPG cure, she said. She also awards small grants (usually $500) to families all over the country who have a DIPG diagnosis and need help paying for expenses.   “I hope, in my lifetime, that no parent ever sits in front of a doctor and a doctor says ‘there’s nothing more we can do,’” she said. “There has to be something.”   GET THE MORNING HEADLINES. SUBSCRIBE The post A rare brain tumor took her son’s life. 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