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Mother’s instincts lead to diagnosis of genetic condition for Moore child

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MOORE, Okla. - Four-year-old Charlie Thomas is busy making Play-Doh creations with her sister at their Moore home.

She presses a piece of brown Play-Doh on her eye, like a patch and shouts like a pirate.

You won't find a child more "in the moment" than Charlie, says her mother Bille.

"Anyone who knows Charlie knows she is sassy, but she is sweet," Billie said.

But Billie says her maternal instincts recognized a health risk when Charlie was a newborn.

Charlie's body was sprinkled with light marks often referred to as café au lait spots. They are the hallmark of a genetic condition called neurofibromatosis , which creates tumors on nerve tissue.

Billie got a second opinion to see what they were, and that's when she first heard of NF1.

"I'd never heard of any kind of neurofibromatosis," she said.

BillIe Thomas' decision to find the source of Charlie's light spots led them to the Jimmy Everest Cancer Center.

An MRI revealed tumors in her optic nerve and a very dangerous one in her brain stem.

"The aim is for kids like Charlie is to catch those tumors early, and treat them before she has complications," says Dr. Abhishek Bavle.

Chemotherapy is putting the brakes on Charlie's tumors.

Charlie's family has home videos of her holding up her arms and making a muscle. You can hear them cheering her saying, "Are you going to kick this tumor's butt? Let's go!"

Week after week of being "Charlie strong" means clinic visits and inventing ways to have fun while connected to a chemo-drip.

"She gets poked and hooked up to chemo, and then it's just as if nothing ever happened," Billie says. "She plays puppets, she colors, plays YouTube and other things like any other kid."

Dr. Bavle agrees and says with a laugh, "She's tolerated it so well, she's not scared of us anymore."

There is no way to predict if NF1 will create new tumors, but Charlie is doing well and her tumors have stalled.

"Right now we're at stable," says Charlie's mom. "We don't know how long she'll do chemo, but she's killing it regardless. She's amazing."

If you'd like to help children like Charlie fight cancer and conditions like NF1, consider donating to JECFriends.org.

Kids with Courage is sponsored by Friends of the Jimmy Everest Center.

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