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In My Own Words: Jackie

Woman smiling, holding a prosthetic leg, wearing a t-shirt with "born fighter" and ripped jeans, standing on one leg against a white background.My name is Jackie, I am 24 years old and live with neurofibromatosis type 1, also known as NF1.

When I was born, the doctors told my parents I most likely had NF; it was confirmed when I was about two years old. They also said I would be blind by age 6, but now at age 24 I still have 20/20 vision! I have had my fair share of surgeries – five – to remove concerning café-au-lait spots and three eye surgeries to fix the eye muscles (that is also where my tumor is located).

Living with NF growing up, it impacted me because of all the what ifs that could result if something would have happened. I also saw NF as the main reason to not do things I was scared of. As I’ve gotten older, I stopped letting NF impact me in that way and started living my life to the fullest!

This moment here, now, is the biggest defining moment for me in my NF journey. Growing up, the one thing I always wanted to do was gymnastics and cheer, but because of NF (and some other reasons) it wasn’t possible! Fast forward to now working for Garland Activewear, a gymnastics apparel company. I brought up the idea to my boss about doing a leotard in collaboration with the Children’s Tumor Foundation and she was 100% on board! I wanted to make more of an impact and bring awareness to NF now I have the opportunity to!


Click here to order a blue and green, CTF-branded leotard! A portion of of the proceeds will support CTF’s mission to drive research, expand knowledge, and improve NF care.