Nate O'Dell: Living with Neurofibromatosis

Author: Janis Paushter, Glenmore Life

Published On: 07/10/2020

Nate, or as his family calls him, “Nate the Great,” is an outgoing, sensitive 27-year-old young man, who four years ago graduated from Liberty University, and now works at the front desk at the Residence Inn in Charlottesville. He comes from a very closely-knit family of six children. Nate, like his three brothers, is an Eagle Scout. Nate’s mother describes him as a caring and kind individual. Nate talked to this writer about this when describing his job at the front desk at the Residence Inn. He sees himself as a good conversationalist who enjoys helping people. Nae feels that he is good at reading people and knows how to approach them at work.

But Nate had to work hard – very hard – to get where he is. When Nate was 18 months old, Nate’s parents noticed café au lait spots on his body. They observed that he was somewhat delayed in rolling over and crawling, and in addition, Nate had little tumors on his body. Dr. Rosenbaum at Children’s Hospital knew right away what the diagnosis was. Nae has Neurofibromatosis Type One, or NF1 – a genetic disorder of the nervous system that affects just about every organ in the body. It causes tumors to grow along nerve-endings, just below the skin. Tumors can also grow on the brain and spinal cord.

Nate’s early difficulties were a portent of things to come. Nate is fortunate that his NF1 symptoms are relatively mild; however, they have affected his daily life. He has had numerous tumors removed. Since the tumors grow on nerve-endings, they can be quite painful. Nate does have a tumor on his frontal lobe that has [remained stable].

As Nate approached school age, it was clear that he had low muscle tone. He received both occupational and physical therapy. Handwriting, he admits, is challenging. By the middle of first grade, Nate was falling behind academically. His mom, Dabney, took charge and decided to homeschool him. Nate and his mom reviewed the first-grade curriculum over the summer and completed the second and third grade at the same pace as his peers. At the end of three years, Nate returned to school and repeated the third grade to assure that he was on track with the other students.

With an incredible amount of determination and help from family and tutors, Nate completed high school and graduated college. Liberty University was chosen due to the family’s religious beliefs and the scholastic aid that Liberty was willing to give Nate. Nate’s mom describes the scariest time the family had was during a college break, when Nate had a Grand Mal seizure due to forgetting to take his seizure medication. From that time on, Nate has been super serious about taking his medication, minimizing stress, staying hydrated, and getting enough sleep.

NF1 occurs worldwide in all races and ethnicities. Half of the cases are genetically passed down; the other half are spontaneous mutations. NF1 affects more than 130,000 Americans. There are more individuals living with NF than those with Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s Disease, and Tay Sachs combined. There are minimal treatments and currently no cure for NF. Learn more at www.nfnetwork.org.

Glenmore Life wishes to thank Nate and his mom for being so open and sharing their experiences with NF1. We talked for over an hour! But mostly, thank you to Nate for being the incredible guy he is – determined to overcome obstacles in his life to be what we all wish to be – a responsible, caring adult.