Family of girl, 6, with DIPG speaks amidst spike in disease awareness
Grace sits with her dad Scott at Skyline Chili (FOX19/Gordon Graham)
Lauren Hill has made national headlines for her fight against DIPG
CINCINNATI, OH (FOX19) -
Grace White is like any other six-year-old. She loves hot dogs, especially from Skyline Chili.
But Grace has DIPG (Diffuse Intrinsic Pontine Glioma)--a disease that strikes only about 150 people each year, mostly children around the age of 5.
Lauren Hill's courageous battle with the disease that picked up national attention this year has raised important awareness about the little known disease.
And Grace's family says that support is essential.
Grace and her family only found out about the illness when she was diagnosed just over a week ago. Her father, Scott, was in Afghanistan at the time where he served as a Lt. Colonel in the Army Special Forces.
After learning of the diagnosis, Scott flew home to be with his family as they fight this deadly disease.
"I'd say this is the worst form of oppression and I'm going to spend the rest of my life fighting this," Scott said.
The White's actually live in North Carolina but they traveled to Cincinnati so Grace could get treatment at Cincinnati Children's Hospital.
"We know Children's is well respected and they've got a really good program for this," Scott said. "We're originally from the Northern Kentucky area so...just the family and friends support here will make everything a lot easier."
"It's such a hard, hard thing that we're dealing with. I'm so blessed the support, the spiritual support, the love of everyone," Grace's mother Amy added.
That support is what Lauren Hill said has kept her going.
"I'm not worried about the future either," Hill said. "I'm just worried about spending time with my family right now and the holidays, trying to get to Thanksgiving and, you know, living in the moment."
Each moment is precious to DIPG patients because the disease is often fatal.
"It does progress pretty quickly," said Dr. Maryam Fouladi, the brain tumor program director at Cincinnati Children's. "Radiation is an effective method and does help shrink the tumor and actually prolongs survival by several months. But it is not a cure."
Researchers at Cincinnati Children's are working hard to find a cure and the money raised by Lauren Hill and The Cure Starts Now foundation is giving researchers a step in the right direction.