MOBILE, Ala. (WKRG) — Aubreigh Nicholas was a fighter and the community fought with her during her 11 month battle with Diffuse Intrinsic Pontine Glioma, or DIPG, an aggressive and rare brain tumor.
Although she’s gone, Brooke and Jay Nicholas say Aubreigh’s Army is ready to continue fighting.
“Just because this battle was lost we don’t want to see the war end on it,” said Jay Nicholas.
Aubreigh already pushed DIPG in the national spotlight by creating the Lemon Face Challenge in an effort to raise awareness for the disease.
DIPG is rare. Only 200-300 kids are diagnosed each year.
Aubreigh isn’t the only child in our area who had been diagnosed with DIPG. We know of at least five cases along the Gulf Coast in the last eight years. We asked a DIPG researcher with the National Cancer Institute if it’s possible we live in a cancer cluster. Dr. Kathy Warren said there is not enough information on DIPG to know for certain.
“We don’t know what causes these tumors, so it’s difficult to find any association,” said Dr. Warren. “If you figure 50 states you’re going to have maybe six children in each state identified each year. Maybe eight over a decade is not unusual.”
Because DIPG is so rare, funding for research is low.
“It’s frustrating seeing these children over and over again, but people have to realize that we are making progress,” said Dr. Warren.
The tumor wraps itself around normal cells making it impossible to remove with surgery and chemotherapy isn’t effective. She says while there’s still no cure for the cancer, clinical trials being done have been promising. However, finding the drugs that can effectively treat it will take more research and more funding.
That’s where Aubreigh’s Army steps in. Brooke and Jay Nicholas plan on starting a foundation to fund research for DIPG so that eventually other families won’t have to go through what they did.
“We know that she’s probably not the last child around here, as sad as it is, that’s going to get it and we want to be able to help those families and help the community rally around them as well,” said Brooke Nicholas.
An army made up of researchers, devoted parents, and a committed community will continue the fight that Aubreigh started.
“People often ask me why I do this and why I focus on DIPG and it’s really the patients and their families that drive this,” said Dr. Warren. “It is truly a gift to be able to treat them and help them through their process even though it’s frustrating that we can’t cure these children. The children and their families are all so special. They remind us how precious life is every day and how powerful hope is every day and really just keep us going.”
While they’re still ironing out plans for their foundation, the Nicholas family is raising money for an organization called The Cure Starts Now which is already raising money for DIPG. To donate in Aubreigh’s name click here.
The Cure Starts Now is hosting a DIPG Warrior Walk on Saturday, November 3 at Battleship Park at 9 a.m. to raise money for pediatric brain cancer research.