Case Study #100 - Robby Broadcasting Hockey

Robby Broadcasting Hockey - 2021 Oil on Canvas. 30" x 24"

Robby was diagnosed with NF at birth, passed on genetically from their mother. Robby is the third child of four children. The eldest sibling in the family also has NF as well. Robby didn't really understand it until they regularly started to have scheduled MRI's at around 6 years old. Throughout late elementary school to middle school, Robby was continually bullied for being different. Robby had a big head, was unathletic, had short stature, among other issues. The bullying ended when they became more open about their life with NF and decided to raise awareness. They did this by running a half marathon at 13 years old in the 8th grade. Through that, Robby had a boost in confidence that helped them get through the high school years at Bellarmine College Prep in San Jose, CA. After high school, Robby went on to study broadcast journalism at the University of Arizona in Tucson, AZ. 

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Robby is now a digital producer for KCUB-AM, Wildcats Radio 1290, as well as a podcast host for the Locked on Podcast Network, covering the Arizona Coyotes. To this day, Robby and his family continue to be open and spread awareness about NF, and while the family doesn't participate in many races anymore, they are still a big part of the community and are open to sharing their experiences with others.

Case Study #102 - Paul Playing Ball with his Kids

"Paul Playing Ball with his Kids" Oil on Canvas. 30" x 24"

Paul Patterson wasn’t diagnosed with Neurofibromatosis Type II (NF2) until he was 33 years old. However, his story is proof that God has a plan for each of us. Paul and his wife, Jessie, started dating when they were in college. At that time, Jessie was an Elementary Education major; however, she changed majors and stumbled across the field of audiology. She continued to graduate school and while she was running research subjects, she diagnosed Paul’s bilateral vestibular loss. Because he had normal hearing, no imaging was recommended. It was not until Paul was 30 when Jessie started to notice some hearing difficulty, which to her surprised revealed some significant hearing loss in both ears. One year later, Paul was participating in a hearing research study and he found out that the hearing loss in the right ear changed significantly. He finally agreed to an MRI, which revealed bilateral vestibular schwannomas, with the growth on the right being significantly larger than the left side. His neuro-otologist at Boys Town referred to the University of Iowa for management of the NF2. Two months after his diagnosis, he met with physicians at the University of Iowa to discuss treatment options. Given the size of the schwannoma on the right side and a growth they found on his spine, surgery was recommended sooner rather than later. Especially because they were expecting their second child in 4 months. One month later, he had a tumor resection from the right 8th cranial nerve and just five days later they removed the calcified myngioma on T7. Timing could not have been better; Paul was discharged from the hospital just a week before everything started to shut down due to COVID-19. He was also able to recover at home with Jessie and 3-year-old daughter, Alexa before the arrival of their baby boy, Miles. Paul started receiving Avastin treatments every three weeks with the goal to preserve the hearing on the left side and slow any other growths along the central nervous system. He also had an Auditory Brainstem Implant (ABI) placed at the time of the tumor resection in case he does lose the hearing on the left.

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Since his surgeries, Paul deals with daily pain from the back surgery, as well as pain along his right leg due to nodules on the right sciatica nerve. The nodules on the sciatic nerve are also causing worsening of his drop foot. He wears an AFO to help with the drop foot, but combined with his bilateral vestibular loss, he has a difficult time with his balance. Paul is resilient and rarely lets his diagnosis bring his spirits down. He values his family more than anything, so he doesn’t let his challenges get in the way of spending quality time with his family. The kids love to be outside and play sports, so he cherishes these moments because he knows that this is something that he might not be able to do when they get older. Genetic testing also revealed that both Alexa and Miles have the same genetic mutation. Paul and Jessie know that God has a bigger plan for them. Paul always has the best attitude about everything, and they know that will allow him to be a great role model for the kids, as well as other individuals diagnosed with NF. So far, Paul’s journey has been short with NF2, but he is anxious to help make a difference in treatments. Paul and Jessie are organizing the first #NFStrong walk in Omaha, NE to help raise funds to support NF research. They hope that with continued research, treatment can advance so that Paul, the kids, and others can live a long and fulfilling life doing what they love. In Paul’s case, that is playing sports with his kids.