Jillian and Crystal: No One Fights NF Alone

Author: Crystal Henderson

Published On: 07/28/2021

Crystal and her daughter Jillian live in St. Paul, MN. As an individual with NF1, Crystal knew that after her daughter was born, there was a chance that this genetic disorder would be passed on to her. In 2014, Jillian was diagnosed with NF1 by the visual markers of neurofibromatosis. While her genetic tests came back negative, this diagnosis began their journey of seeing genetic doctors, mental health providers, neurologists, as well as starting multiple scans, blood draws and medications.

Because of the negative genetic test, Crystal had to call to get on lists for appointments, check when they could be seen, and be told it was not important to be seen as often. Seeking answers and help for her and her daughter, Crystal moved to a new NF clinic in 2019. Doctors at the clinic decided a skin punch test would be the only way to move forward with care and confirm Jillian’s diagnosis of NF1. Crystal was hesitant to subject Jillian to this test, but ultimately decided that this would be the best way for answers for her daughter. Following the test in October 2019, Jillian’s results confirmed she was positive for mosaic NF1. These test results brought about mixed feelings for Crystal; she was happy to finally be done with the fight, but mad that her baby had to go through the pain of the test to know what Crystal already knew.

Jillian experiences seizures and severe pain, and has also been diagnosed with high blood pressure, sensory processing disorder, ADHD, generalized anxiety disorder, and a sleep disorder. She is developing below average on balance, speed, agility and fine motor deficiencies but has been making great progress in physical and occupational therapy. Jillian struggles daily with putting on socks and underwear because of how they feel, and shoes make socks worse. She has outbursts of hitting things, yelling, crying and being upset, however melts in Crystal’s arms and seeks her help and reassurance in those emotional moments. Together, they are working on using Jillian’s words to explain how she feels and learning how to communicate and understand one another. As Jillian approaches this stage of puberty, Crystal understands that there is a lot of anxiety around this stage of her life and to be prepared for other manifestations of NF that may be around the corner.

Crystal understands that in the world of NF, you must be an advocate for you and your family’s care. Insurance and financial assistance can be difficult to navigate but help is there if you continue to ask for it and fight for it. Reaching out to the county, Crystal found mental health services and a family support grant to aid her and her family with their genetic disorders.

Back in 2019, Crystal and Jillian participated on a patient advisory board for AstraZeneca where they talked about their experiences as parent and patient with NF1. Jillian sat as the youngest member of this board at 9 years old. She, alongside other NF patients, sat at the front and was not forced, but chose to talk in front of a room full of researchers and doctors who were present and viewing online. Crystal’s heart swelled at the strength of her daughter and was so impressed by her voice with these medical professionals.

The NF journey is not one you have to go on alone. We at the NF Network encourage you to reach out to us for help and support by emailing admin@nfnetwork.org or calling us at 630-510-1115.