JACKSONVILLE, Fla — May marks National Neurofibromatosis (NF) Awareness month.
Most people diagnosed with NF don't find out until their late teens or in adulthood but that wasn't the case for 9-year-old, Kairi Crissman.
After failing a hearing test at 5-years-old Crissman's mom, Veronica Estrella took her to the doctor.
“I remember sitting there and being told she has a brain tumor and from there it was just static it was like Charlie brown wah wah wah you’re not really sure how to handle that kind of new it’s really jarring,” Estrella said.
By 7-years-old, Crissman's tumor had been removed but not without leaving damage.
“She was left with paralysis and no hearing," Estrella said.
Despite the removal, Crissman will live with NF for the rest of her life.
“Most of what we do is monitoring and seeing if we’ve got new growth in different areas. Over the last decade or so we’ve developed different kinds of drugs that can help slow the growth of tumors and a different kind than what Kairi has can shrink the tumors," Medical Director of the Wolfson Children’s Duran Genetics Center, Dr. Pamela Trapane said.
Estella says there have been challenging days but Crissman faces it head-on.
“If someone makes fun of me, just either ignore them or just say thanks that’s a compliment," Crissman said.
“Kairi’s very open about it we talk about it a lot I’m very big on advocating for herself and teaching people what she has," Estella said.
To learn more about Neurofibromatosis and how you can help shine light on the disorder click here.