Growing up I always knew I was different. I had spots all over my body. I actually thought for a while that I was part leopard. I don’t remember how old I was when I learned I had Neurofibromatosis (NF), but I know it was sometime in elementary school. I come from a long line of those with NF. My grandma had NF, my mom has NF, my older brother had NF, his two sons have NF, and my daughter, Bernadette, has NF. Bernadette is a fun loving 3 year old with beautiful bouncing golden curls. She loves unicorns, princesses, and football. She loves to play with her older brother and help take care of her little sister. While my NF has always been very mild, Bernadette’s has been more significant. This past March, Bernadette was diagnosed with an emerging optic glioma. We don’t know what effect the tumor will have on her future or her education. We have increased our doctor appointments to monitor her tumor. We are praying that there will be a cure in the future.
– Danielle
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