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Stories of NF: Adriana W.

By February 21, 2017December 5th, 2023NF1, Story of NF

“Adriana was about 8 months old when we took her to the doctor because she was sick. It turned out to just be a severe cold, but the doctor noticed all these spots on her body (café au laits)and referred us to a neurologist.

“NF impacts our lives in both negative and positive ways. We have met so many amazing people because of NF that we are so grateful for because they understand and are a great support system. Unfortunately it impacts us in negative ways too, you just never know and every time you think you’ve got a handle on things, something new pops up and brings you back to the realty that is living with NF. You just never know what to expect and every new bump or mark you wonder, is that normal, or is this a new plexiform? Every behavior, is this normal or from her medicine?

“Adriana has always been strong from day one and she is always more concerned about the wellbeing of those around her. Even when she was in chemo from her optic glioma, she would always make sure the other kids got the toys they wanted to play with and that the nurses and doctors were happy too. We stay strong through this to help others to ensure others can smile. Making others smile and find the light at the end of the tunnel brings us joy. We raise awareness and share our story whenever possible to help find a cure; awareness is our biggest motivator.”


Adriana loves going to church with her Nana and spending time with all of her friends.
She loves school and helping her teacher.
She loves to dance and has been taking lessons for 3 years.

-Adriana’s mom, Amber