Zoe Comiskey is 16 years old and lives with NF1. She is currently working on her Girl Scout Gold Award. She developed her project in conjunction with her doctors at Children’s Hospital of Philadelphia. Zoe will be meeting with newly diagnosed patients and their families to share her story and help them feel better about this new world they’ve now entered.
We asked Zoe to tell us about what she remembers about first finding out she had NF and the origins of her Girl Scout involvement.
When did you learn that you had NF? What was that like for you?
I was 8 years old when I was diagnosed NF. It was by far one of the scariest things for me. I was terrified. I didn’t know anyone that has had NF, and I didn’t really know what NF was. Because I didn’t really know what it was and I didn’t know anyone who had it, I felt like I was alone. But throughout the years I have learned that I don’t need to be afraid or scared of it. And instead of looking at it in a bad way, I started looking at it in a way that makes me, me.
Why did you decide to become a Girl Scout?
I became a Girl Scout in kindergarten. I just moved to my town and my neighbor was the Troops leader. Her daughter was also in the troop and was one of my best friends. They asked me to join to meet other girls my age before school started. It originally started as a way to meet new friends but I quickly started to love Girl Scouts and helping the community.
How did you develop this project? What are you hoping to accomplish?
I came up with the idea of working with NF for my gold award project because, when I found out I had NF I felt like I was alone. And I don’t want anyone else to ever feel alone and I want them to know that we are all in this together.
What do you want to do when you are finished with school?
When I finish school I would like to become a fashion designer.
What’s something you wish others understood about you?
Because of my NF I am missing my right ulna (a bone in the forearm). I had to go through 9 reconstructive surgeries. Missing my right ulna put me at so many disadvantages. But I will always try. I will never let my disability get the best of me. But I feel like some people think I can’t do much because of my arm and they look at my like I am different. I wish more people understand that I can do most things and I will always try my best. And I am not different at all. My disability doesn’t make me different. It makes me unique, and makes me standout among everyone else.
If you could give one piece of advice to younger kids with NF, what would that be?
NF may seem scary and you may not know anyone else that has NF, causing you to feel like you are alone and no one else understands what you are going through. But always remember that you are never alone in this. Everyone that has NF goes through this together. We are all in this fight together.
