Nolan lives with his parents in Willis, MI. He is a HS freshman who is a good student, plays trumpet in marching, symphonic, and pep bands, and plays on the varsity tennis team (once a week at a local club during off-season). He enjoys game club, excels at games of strategy, and has a fantastic sense of humor which includes clever wordplay.
He prefers not to discuss his NF2 and has managed stares/questions well from a young age. When we connected with NF2 BioSolutions we were incredibly impressed with the collection of experts/volunteers who have made quick progress working toward the goal of a treatment for NF2.
Nolan is hoping to be the 1 st patient in gene replacement therapy clinical trials, praying they will happen soon enough to preserve his hearing.
Nolan’s journey began when he had tumors from his wrist and ankle removed for biopsy when he was 4 years old. He was referred to a specialist, who referred to the genetics clinic at U of Michigan. An MRI confirmed he had bilateral vestibular schwannomas. The first NF2 test of his blood was negative, but the second test of his tumor tissue confirmed NF2 diagnosis. Nolan had a spontaneous truncating mutation and has the mosaic form of the disorder, meaning not all cells are affected.
Nolan was healthy and unaffected at first, but started a schedule of many, many doctor appointments.
As his NF2 progresses we see 10+ doctors/clinicians regularly, have repeat brain/spine MRIs and other imaging, and average 2-3 appts. per month with communication by phone, email, and message system weekly.
Nolan started karate at age 4, where his sensei and dojo mates were very sensitive to his situation. At age 12 he achieved 1 st level brown belt (1 level below black) but was unable to continue due to pain and continued tumor activity. He also played soccer from the age of 4. He pushed through his limitations, but switched to tennis at age 12 as well, due to pain in his legs.
At age 9 Nolan had surgery to remove a tumor near the brain stem. When he was 12, a baseball-sized tumor was removed from his elbow and at age 13 his largest mass was removed from his right armpit area, along with 3 facial tumors. On Feb. 4, 2019 he had 6 more tumors removed from various locations, the most bothersome on the bottom of his foot. Nolan’s least favorite thing alternates between general anesthesia, and having an IV.
MRI confirms numerous (20+) spine lesions with the largest 2 masses at the base of the spine near his tailbone. We are investigating surgery on these tumors as the probable cause of his chronic, sometimes debilitating pain. Nolan takes about 16 pills a day attempting to control his leg pain. The biggest difficulty is falling/staying asleep, so Nolan manages chronic sleep deprivation on top of his other challenges. This decision is the most difficult yet, as the location (at the bundle of nerves controlling everything below his waist) presents a higher probability of an adverse outcome.
Nolan remains hopeful for gene therapy treatment soon.
Accelerating Novel Therapy Research for Neurofibromatosis Type 2