Living with NF1 has been a part of my life since I was two years old. NF1, for me, has mostly been an invisible disability. Most of my tumors are hidden and I have never had any serious complications. However, for me the real debilitating part of NF1 is living with the unknown. I don't know what complications I might have down the line, and more importantly how NF1 will affect my daughters. NF1 is a very unpredictable disorder, and it affects varies in severity from person to person with no real rhyme or reason.

Eleanor "Nora" Austin was diagnosed with NF1 by the age of 11 months. She had classic symptoms from birth, but luckily so far has not had any major complications. Rory is 18 months old, and we thought she had escaped the diagnosis but more symptoms have been emerging recently. While we await an official diagnosis, we know in our hearts that she has it as well. 

My mother also had NF1, and she was not as lucky. Even though I am afraid for what the future holds for my daughters, we are blessed to be living in a time with such advancements in the field of NF1 research. New medications and findings are on the horizon, and that is partly in thanks for fundraisers such as this.