My name is Helga Pavlicek and I have 15-year-old twins, Kane and Lauren. Kane was diagnosed with Neurofibromatosis Type 1 (NF-1) at the age of 3. As an infant, Kane would experience sudden, high fevers of 105-106 degrees with outbreaks of petechiae, accompanied by trips to the ER. We also started noticing birthmarks on his skin and a proptosis of his right eye. An MRI (magnetic resonance image) confirmed that he had an optic glioma, which caused some vision loss and color blindness, and at this time he was officially diagnosed with NF-1. If the glioma would have caused more vision loss, we were faced with the decision of putting a port in his heart, along with a couple years of chemotherapy. We monitored the tumor, and after about a dozen MRIs, “stable” became our family’s favorite word.
Kane also experienced some mild developmental delays, and he has worked with a speech therapist for many years. In addition, he was diagnosed with ADD, and the medication his doctors gave him has worked very well in helping him focus on schoolwork
Luckily, the tumor has stopped growing, and the doctors determined that Kane has a mild case of the disorder. Other patients aren’t so lucky, so our family decided to help others with NF. I heard about the Children’s Tumor Foundation (CTF) and read about their fundraising walks held all over the U.S. In 2011, I volunteered to join a team to start a walk here in the Dallas area, and we have carried on that tradition for many years. Our family and friends alone have raised over $20,000 for NF research. This led to participation in several Cupid’s Undie Runs as well as working with other organizations like Texas NF and Seventeen22. I plan to continue with advocacy work to help raise both awareness and funds for this rare disease.
I first heard about the NFRP through a friend and fellow NF mom, Tammy Benson-O’Brien. I was honored to be nominated through the CTF as a consumer reviewer for the program. The process was very thorough, and I had wonderful mentors to help me along the way. The panel meetings were fascinating scientifically, and I learned so much about not only the science that aims to improve the lives of those with NF, but also the process of funding the research. I am honored to be a part of such important work.
I am currently the Chair of the World Language Department at my college preparatory school, as well as a 7th and 8th grade Spanish teacher. In my spare time, I enjoy spending time with my twins, attending their sporting events, reading, writing, and traveling. Our family is looking forward to a trip to Rome for a family wedding this summer. Our biggest goal is to eradicate NF, and we look forward to the day when we can hear the words “There is a cure for neurofibromatosis”.
Last updated Thursday, May 26, 2022