ORANGE COUNTY, Fla. — An Orange County firefighter is turning personal tragedy into purpose, helping raise money for childhood cancer research while honoring the son he lost nearly two decades ago.

What You Need To Know

 Orange County firefighte Steve Kibler lost his son to leukemia at five months old

 Kibler now helps raise money for pediatric cancer research through St. Baldrick’s events

 Pediatric cancers receive about 4% of federal cancer research funding

Doctors say childhood cancer remains the leading disease-related cause of death among children

Steve Kibler’s life changed forever when his baby boy was diagnosed with leukemia.

“He developed some signs and symptoms. We didn’t know exactly what was going on. We saw some specialists. They said it’s definitely not cancer, and two weeks later, he was diagnosed with acute myeloid leukemia, and he passed away at the age of five months. So he lived 160 days,” Kibler said.

The loss left Kibler and his wife struggling to cope.

“There wasn’t a lot of feeling. It was a lot of confusion and numbness at first and just a sense of loss. My wife and I just laid in the bed for weeks, if not months,” he said.

Eventually, Kibler said they began looking for ways to heal.

“We just started doing different outreach programs for therapy for us to begin with. And St. Baldrick’s was one of those events that started off as therapy for us,” Kibler said.

That therapy turned into advocacy.

Kibler now helps organize events connected to the St. Baldrick’s Foundation, which raises money for pediatric cancer research. Over the years, the local effort has raised nearly half a million dollars.

“They (St. Baldrick’s) actually just let us know that in total, we’ve raised $497,000 for the cause. So to think that I’m just a dad. I’m just a dad that was looking for something to do, to occupy my time and to try to start removing the grief,” Kibler said.

Doctors say funding for pediatric cancer research is critical.

“Childhood cancer is rare and biologically complex compared with adult cancers, and it is still the leading disease-related cause of death in children,” said Dr. Amina Rafique, section chief of pediatric hematology oncology at the Haley Center of Cancer and Blood Disorders at Arnold Palmer Hospital.

Despite that, pediatric cancers receive only a small share of research funding. According to Congressman Brian Fitzpatrick, co-chair of the Congressional Cancer Caucus, pediatric cancers receive only about four percent of federal cancer research funding – even though nearly one-fifth of the U.S. population is under 18.

Doctors say the lack of funding can slow progress in developing new treatments.

“Lack of funding delays progress. Several children cannot access timely therapies, particularly at the time where they needed more urgently,” Rafique said.

For Kibler, raising money is about helping other families facing the same devastating diagnosis.

“When they donate money, it’s not just going to some big machine, it’s actually going to a family, and it’s going to children, someone that’s loved and cherished,” he said.