NEW ORLEANS — Four-year-old Amelia Hindman is battling a rare form of brain cancer which doctors say is untreatable. She's only expected to live for another 18 months, and now Hindman's mother is spreading awareness about her diagnosis.
Brittany Stevens sat down with WWL Louisiana's morning news anchor, Brheanna Boudreaux.
Stevens said Amelia is diagnosed with DIPG (Diffuse intrinsic pontine glioma), a rare and terminal brain cancer that affects 300 children every year.
Amelia's parents said they noticed a change in her balance and scheduled an appointment with her pediatrician on June 20.
When Stevens dropped her off at school the day before the appointment, she later got a call that Amelia's balance was off. "Her motor skills were slipping and her speech was starting to slur," she told Boudreaux.
She picked her up from school and immediately brought her to the emergency room where a CAT scan showed that Amelia "had a mass in her brain". Amelia was then taken to Children's Hospital.
"When she got back from recovery and the neurosurgeon team walked in, immediately you could tell it was horrible news," Stevens said to Boudreaux. "Nobody was looking at us in the eyes, everyone was looking down and the room was very silent."
At that moment, Steven's fiancé cut the tension and asked, "Is this terminal?"
The reply they got was, "Well, it's not good. It is inoperable and there is no treatment for it." That's when they learned about DIPG.
"Which is in the brain stem, but more specifically, it is in the pons in the brain stem," Stevens explained to Boudreaux. "In the pons is where all of your vital things for life are," like breathing, she said.
Doctors told Stevens the treatment that they know works for her diagnosis is six weeks of radiation, which will shrink the tumor, "but once that tumor's shrunk, it will always come back," she told Boudreaux.
Three different early trials were presented for Amelia. Her mother said she wasn't risking it and took it upon herself to do some research.
"I found the only drug that there is that is in Phase 3. It's called ONC201," Amelia's mother said.
After discovering that Amelia was expected to live for 18 months, she continued researching.
Stevens also said she found a disturbing fact while researching, and that's one reason she wants to raise awareness.
"All the money that goes to cancer research a year, only four percent of that money, annually, goes to pediatric cancer," she said to Boudreaux.
She told Boudreaux that comes to about $250 million a year and just about $3 per child.
Stevens' and Amelia's family is holding a raffle until Monday, Aug. 19. A GoFundMe was also created to support Amelia's treatments.
► Get breaking news from your neighborhood delivered directly to you by downloading the new FREE WWL-TV News app now in the IOS App Store or Google Play.
RELATED: Free special home air filters for cancer patients to help prevent COVID | Here's how to get one
