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My family and I have been fighting NF together since I was a baby. I have had multiple surgeries over the years to try that make me feel as comfortable as possible. My mom also has NF. Although I am grateful for the life she and my father gave me, I don’t want kids. With the current state of the world, I don’t want to bring in a child to this world with NF. In my eyes, I think it would be a lot more difficult to be a child in this era then it was in my childhood.
We learned of Layla's NF1 diagnosis when she was only 1 week old.
Layla suffers from severe headaches; there are three growths in her brain stem and one on her spine. She also has restless leg syndrome and ADHD. She has had four eye surgeries since birth.
On a crisp Fall evening at the renowned American Museum of Natural History in New York City, philanthropists, donors and fundraisers gathered with researchers, NF patients and their families to commemorate the Children’s Tumor Foundation 40-year history of fighting NF, and to pay homage to those who first joined together to raise money and awareness when there was none. More than $1.6 million dollars was raised to support exciting NF research endeavors.
I was diagnosed with NF2 in 1997. I have had 5 surgeries and 2 Gamma Knife procedures, the most recent being in March 25, 2018.
I refuse to be labeled by my condition. I am simply a person who has to go through some unpleasant times.