When our son Sebastian was 3 years old, he was diagnosed with NF1. Neurofibromatosis type 1 (NF1) is a genetic disorder that affects the nervous system. The NF1 gene is one of the genes responsible for suppressing tumor growth. So a mutation on the NF1 gene allows tumors to grow on nervous tissue throughout the body. Tumors sometimes form on the optic nerve, causing blindness, or in the brain or spine causing a host of other problems. In addition, NF1 can cause deformation of bones, like scoliosis and tibial dysplasia, behavioral disorders like autism, seizures, an increased risk of cancer, and more. NF varies greatly from one case to the next, even within families. There is no way to predict how serious it will be, no known way to prevent it, and no cure. Treatment only includes managing symptoms and removing tumors if they become a problem. It is a life-long, progressive disease, meaning it will only get worse with age.
Every year we join in the effort to raise awareness for NF by participating in the Portland NF Walk, hosted by CTF. If you are interested in joining our team, or in making a donation, you can do that here.
If you are looking for more information, here are some resources I have found helpful over the years:
Children's Tumor Foundation's (CTF)
Parent Guidebook
NF1 stories on The Mighty
If you'd like to read about Sebastian's journey with NF, you can do that here.
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