January 22, 2011 – November 15, 2021
Diagnosed: December 12, 2020
On December 12, 2020, Kate and Kurt Rongey’s lives were abruptly turned upside down when they learned their daughter Julianne had diffuse intrinsic pontine glioma (DIPG).
In the weeks preceding Julianne’s diagnosis, the spunky, high-spirited 9-year-old began to lose her balance. Double vision and slurred speech prompted the Rongeys to rush their daughter to the doctor.
After an MRI, Kurt and Kate were taken to a small consultation room and met with an oncologist, the hospital chaplain, and a child life specialist. The doctor explained that Julianne had DIPG and would need to start steroids and radiation immediately. However, the effects of radiation would be only temporary, and Julianne likely had just 6 to 9 months to live.
The first two weeks after diagnosis were incredibly difficult as Julianne’s symptoms continued to worsen. She didn’t respond well to her first two treatments, and brain swelling led to 9 days in the ICU. Feeling helpless, the family feared Julianne wouldn’t even make it until Christmas.
But after continued radiation treatments and steroids, Julianne began to make unexpected improvements, and her tumor started to shrink.
In February, Julianne started treatment at Children’s Medical Center in Dallas. Under the care of Dr. Daniel Bowers, Julianne began receiving weekly doses of ONC201, which works by killing cancer cells while leaving normal cells unharmed. While the drug is showing promise in the fight against DIPG, in the end it could not save Julianne.
Julianne bravely battled for a total of 11 months before passing away on November 15, 2021. Inspired by their daughter’s courage, Kurt and Kate Rongey are committed to help spread awareness of the disease that so cruelly took their child.
“Her joy shines through her eyes, and she has a way of making us smile when we’re feeling discouraged.” Kurt, Julianne’s daddy.
