3-year-old, family spreading awareness about genetic disorder

Bobby and Anne hope that through more research and funding, they can find a cure for their daughter's disorder.
Published: May. 25, 2023 at 5:02 PM EDT
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CINCINNATI (WXIX) - A three-year-old girl and her family are using Neurofibromatosis (NF) Awareness Month to spread awareness about the disorder impacting their lives.

NF is a genetic disorder that affects people’s nervous systems in different ways. Tumors appear on the nerves of a patient and can show up as spots on their skin, or they are simply invisible.

Anne Cox learned her daughter, three-year-old Vivien, had NF just before her first birthday.

“I always say that we have a punch card at Children’s [Hospital],” says Cox, “But that being said, we are so fortunate to have them right down the road.”

An MRI at Cincinnati Children’s Hospital revealed an optic tumor near Vivien’s eye.

So far, Vivien is handling the disorder well, but time will tell how this could impact her health.

“Our prayer is that she’s happy and healthy, but at the same time, we don’t know what the future holds,” explains Anne. “So, at the end of the day, it’s a lot of unknown.”

Vivien loves to ride her bike, play soccer, and play with her dog and older brother.

Her parents say she doesn’t know that anything is different about her despite spending lots of time at the hospital.

This summer, Vivien will have her 11th MRI.

“It’s really good to talk to other people that have the same issues and concerns,” explains Vivien’s dad, Bobby. “Because you can read about it a lot, but when you meet people that have other kids [it means more].”

Bobby and Anne hope that through more research and funding, they can find a cure for NF.

Of course, that will take more funding for research. That is where they can use the community’s help.

There is a walk happening on June 3 called Shine a Light Walk.

It begins at 8:30 a.m. at Corwin M. Nixon Park in Mason. It will last until 2 p.m. The walk starts at 10 a.m. with activities continuing after the walk.

You can register online.

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