My twin sister and I were born in September 2006, and we were happy, healthy babies. Over time, my parents noticed differences between my sister and me. My right eye started to protrude, I started to get sick often, and I started to develop café-au-lait spots.
I have lots of these spots, and my pediatrician noticed and she recommended a specialist at Children’s in Dallas. I was diagnosed with NF-1 when I was three years old during my first sedated MRI, and an optic glioma was found on my optic nerve behind my right eye.
I am now 11 years old, and I have had 12 MRI’s to monitor the glioma. Luckily, it has stopped growing and has not required chemotherapy. I have had other complications, such as acid reflux, high fevers, tonsillectomy surgery, fine motor skill issues and some learning challenges in school.
On the other hand, I am a very happy 11 year old, and my favorite hobby is recording sports statistics. My parents buy me lots of spiral notebooks so I can keep stats. I love baseball, and the Texas Rangers are my favorite team. I love the Dallas Cowboys also, and I would love to see them win their sixth Superbowl! I also enjoy finding movie mistakes and playing with my hamster Maxi.
My parents and I helped start the first Dallas NF Walk in 2011, and we have been very involved with spreading awareness ever since I was diagnosed. We have had lemonade stands and garage sales to raise money, have attended the Frisco Rough Riders games, and we have volunteered for everything we can.
My parents always say, “You have NF, but it doesn’t have you”. My goal is to find a cure in my lifetime. End NF!
We are participating in two fundraisers, the Children's Tumor Foundation Annual NF Walk on October 13, 2018. Here is the link if you would like to help: https://join.ctf.org/team/179046
My mom is also participating in the Cupid's Undie Run on February 16, 2019. Here is the link if you would like to help: https://my.cupids.org/HelgaPavlicek