Catherine Lee

Meet 9 year old Catherine! She loves to ride horses, take dance lessons and play with friends. She is smart, sweet and loving, and she also has neurofibromatosis type 1 (also called NF1).
We had no idea what NF was until her doctor suspected she might have it due to the amount and location of pigmented spots on her body called café-au-lait spots. She was just 1 year old at that time. Over the past 6 years since her official diagnosis, we have learned a lot about NF, a disorder that affects more than 1 in 3,000 births.
Catherine was officially diagnosed with NF at the age of 2. Upon having a follow up MRI, we were devastated to learn that she had a type of brain tumor called an optic nerve glioma. More recently, she has been diagnosed with a plexiform neurofibroma, which is a more complex type of tumor on her scalp behind the ear. Catherine currently has 9 specialists and must have numerous doctor visits each year, but she always takes it in stride and remains a happy girl.