(LEX18) — At least five children 12 years old and younger in southeastern Kentucky have been diagnosed with diffuse intrinsic pontine glioma, or DIPG, across several counties including Knox, Whitley and Laurel — and the growing number of cases has captured the attention of lawmakers across the state.
All five cases were diagnosed in the last two years. According to the National Institutes of Health, about 300 kids are diagnosed with DIPG each year in the U.S.
Karen Kelly, chief of staff for Congressman Hal Rogers, said she was first contacted about a little girl in Corbin who was recently diagnosed with DIPG. That little girl is Millie Kate Daugherty, a 6-year-old LEX 18 first introduced viewers just weeks ago.
"And then I started getting other phone calls about it, um, from that, you know, from the region. So, we wanted to reach out to the National Institute on Health to talk with them and the National Cancer Institute about what could possibly be going on here," Kelly said.
Kelly said the cluster of cases prompted outreach to federal health agencies to investigate what may be behind the diagnoses.
"Only 6% of the research for cancer goes to pediatric cancer and only 4% of that goes to DIPG," Kelly said.
Kelly also noted that the true number of cases in the region may be even higher than what is currently known.
"I've learned a lot, but one thing that I specifically learned is that there could even be more cases, but if you go out of state to be diagnosed, that doesn't show up in Kentucky's Cancer registry for a long time," Kelly said.
Rogers released a statement on Facebook saying in part: "I stand ready to assist in any way possible to advance medical information to prevent, treat and cure these devastating cases of childhood cancer."
Kelly said the issue is deeply personal.
"I lost a brother to colon cancer. My brother-in-law right now is on hospice care. But when a child is diagnosed, it just feels like a world that they should never know exists. So we're going to do all that we can," Kelly said.
The Vitale Foundation awarded a grant toward DIPG research with the hope of finding out what could be causing these cases and to find a cure.
