Celebrating 35 Years
neurofibromatosis, nf, nf1, faces of nf, neurofibroma

Katy – A Face of NF

Katherine (or Katy) is 5 years old and was diagnosed with NF1 in October of 2018. Our first sign of any issues was a “lazy eye” or so we thought. Katy has a few cafe au lait spots, bilateral optic gliomas, small stature, multiple neurofibromas, speech delays, learning disabilities, and three tumors from the base of her spine down her neck. She began chemo therapy treatments to slow the growth of the tumors on her optic nerves in hope of saving her remaining vision that has diminished to the point she is legally blind.

All these issues don’t stop Katy from believing she is a Superhero. She loves to make videos, sing in front of big crowds and make friends with every person she meets, young or old.

Katy will have many challenges as she grows and we hope that by sharing her story we can will help bring awareness to NF and help bring more funding for research to cure this disease.

– Rebecca (mom)


See More Faces of NF/Read Their Stories


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