Less than one year after losing their daughter Violet to a rare pediatric brain cancer, Madeline and Steve Napleton are launching a foundation to help fight the aggressive disease.
Violet Napleton turned three years old on October 15, 2021. Three weeks later, on November 9th, the normally energetic preschooler said her legs hurt and she couldn’t walk.
“For a 3-year-old whose favorite thing to do was run laps around the couch, that was the point where we just immediately went to Lurie’s and took her to the ER,” Steve Napleton, Violet’s dad said.
An MRI revealed Violet had a rare form of pediatric brain cancer. “She didn’t want to walk that day. Within the next couple weeks, she lost her ability to walk entirely and then talk,” said Madeline Napleton, Violet’s mom.
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Violet was diagnosed with Diffuse Intrinsic Pontine Glioma, called DIPG. “It’s a rare pediatric brain tumor. It only effects 200 to 300 patients each year,” said Violet’s doctor, Dr. Ashley Plant-Fox, a neurooncologist at Lurie’s Children’s Hospital.
Dr. Plant-Fox said treatment options are minimal.
“It’s really devastating just how fast it presents and then to find out on day one that we don’t have good treatment options to offer is just terrible,” Dr. Plant-Fox said.
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“It’s still the same treatment that Neil Armstrong’s daughter got in the 1960’s. That is the exact same treatment plan that our daughter got in 2021, which means nothing. It’s a fatal, fatal tumor,” Madeline said.
Violet passed away from DIPG three and a half months later, but her parents are still fighting for other families. They are launching the Violet Foundation for Pediatric Brain Center to help raise money for research.
“Funding is always an issue for pediatric brain tumors, especially if its rare,” Dr. Plant-Fox said.
In addition to research, the Napletons are also launching the foundation to help other families at Lurie’s Children's Hospital who are going through the same ordeal.
“For us, as horrible as it was, but we didn’t have to worry about paying rent or paying for food, but there are real examples of families at Lurie right now of families that are in that exact situation,” Steve said.
Violet’s doctor, Dr. Ashley Plant-Fox, sees those needs daily.
“Really having financial support in the terms of next month’s rent so they don’t have to think about it in the context of fighting for their children’s life is super important,” Dr. Plant-Fox said.
Seven months after her daughter’s passing, Madeline said it’s still hard to talk about.
“It’s probably something I wasn’t ready for, but it doesn’t matter. Families need help now and I know that any kid getting diagnosed with DIPG today or tomorrow has the same outcome Violet had and that’s something we can’t ignore.”
