Bethany girl’s future blossoms as she battles optic nerve tumors

Kids with Courage
Data pix.

BETHANY, Okla. (KFOR) – She is a bubbly six-year-old girl from Bethany, Okla.

With a paint brush in hand, she dabs water colors on a picture that includes a poem written just for her by art therapy staffers. It reads, "My name is Miracle. I am 6 years old. I like monsters, slime, play dough and painting. All the colors are my favorite. I especially like sparkly shoes and dress up. I am a MIRACLE!"

Miracle adjusts her cute, trendy eyeglasses.

It is hard for her to understand that doctors at Jimmy Everest Cancer Center are fighting an enemy behind her eyes.

Doctors discovered small tumors in her optic nerves almost a year ago.

It's a side-effect of a genetic condition called neurofibromatosis or NF-1.

"She's bouncy, she's creative, she plays make believe all the time. To look at her you wouldn't know there is anything wrong," says her grandmother, Carla Maddox.

She clearly remembers taking Miracle for testing as a newborn, absorbing the shock of the news that Miracle had inherited NF1 from her father as they feared.

"I cried and cried. My husband pulled over to the side of the road, got out of the truck and walked and paced and cried," she said.

Every patient with NF1 is different. Symptoms can range from harmless "cafe au lait" spots on the skin to troublesome tumors that grow on nerves, and deep in sensitive parts of the body.

Pediatric oncologist Dr. Abhishek Bavle explains, "We know patients with NF1 can have tumors in their eye nerves, and she has them. We were following it, and in an MRI, we could see it was getting bigger."

Without chemotherapy treatment to stall those small tumors, Dr. Bavle knows that Miracle could go blind.

Miracle loves coming to Jimmy Everest Center, except for the part where nurses access her port for chemotherapy treatment.

Dr. Bavle says, "She's a great fighter. She's been through chemo for many many months. That is the challenge of treating this type of tumor."

The goal of her weekly chemo is to keep those dangerous tumors from growing. Eventually in her teenage years, they should essentially "burn out."

Dr. Bavle adds, "The older she gets, I'm very hopeful this will not cause her problems."

Miracle's grandmother is full of hope.

"The doctors say her eyes are stable, so it's looking good," she said.

At home, Miracle and her grandparents just try to make the most of each and every day of life.

"Shes' life," says Carla. "She's just bubbly, bubbly life. Everyday that we get to live that with her is a blessing."

With that love and the team at Jimmy Everest, Miracle's future is blossoming.

Research on NF-1 is expanding, which is exciting to JEC doctors. New improvements include a chemotherapy pill.

If you'd like to help children like Miracle fight illness, consider donating to JECFriends.org.

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