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Stories of NF: Gracie S.

By November 9, 2020December 5th, 2023NF1, Story of NF

We found out Gracie had NF1 in May of 2019 and it changed our lives forever. Everything happened so fast, one minute she is diagnosed and just a few months later my sweet girl is going into surgery to put a port in to start chemo in October 2019 because the optic gliomas were affecting her eye sight. I’ve never seen a braver person than my 4-year-old daughter. I actually look to her for strength. Even when she gets sick from the chemo, she always has a smile on her face.

We have to travel to other states for treatment because the current state we live in has no pediatric specialist. My daughter and I have to live in another state while her Daddy has to stay home, so we live without him until her chemo treatment is over.

My daughters spirit keeps us motivated. She is the most loving and caring little girl I know. All we can do is stay positive. We tell her everyday how brave and wonderful she is. I like to tell other Moms going through the same thing that we are in this together and encourage them to stay strong and positive. Show our family members with this disease that we are with them 100%.

Through all the traveling and hotel rooms she always has a positive attitude for being so young. This experience has made our family so much stronger and so close. She is nothing short of a miracle for me and my husband. She is our inspiration, she is my NF Hero!

-Submitted by Gracie’s mom Paige



The journey of a thousand miles starts with one step

Favorite song
“Let It Go” from Frozen

To be able to take sickness away