May. 1, 2015
Posted by Jennifer Huron
“The good thing about being diagnosed with Neurofibromatosis is that I can help other people with it,” says Bailey Gribben.
Bailey and his mom remember the days before his diagnosis: one day on the phone, he casually said he needed put the receiver to his good ear. This prompted a visit to the doctor, and it was then that they found a tumor in his left ear.
Two years later, a tumor on his spine and genetic testing revealed Bailey had Neurofibromatosis Type 2 (NF2), a genetic neurological disorder that causes tumors to grow on the nerves of the brain and spinal cord and is characterized by hearing loss.
In the 10 years and 14 surgeries since, Bailey has been a mission to find a cure. He has raised more than $75,000 for the Children’s Tumor Foundation, served as one of their ambassadors, participated in a study at the National Institutes of Health, regularly attended events, and repeatedly voiced the need for research.
“I have big plans and dreams and I will not let NF2 stop me from doing what I want to do,” says Bailey.
He never dwells on the disease, or that he must wait and watch every six months to see if the tumors have grown, or that doctors have told him he could wake up one morning and be deaf, or one day they may need to amputate his leg. Instead, he moves forward, focusing on action and awareness and what he wants to accomplish.
This fall, Bailey will enroll at Rochester Institute of Technology to study computer engineering and technology. He plans to work at Google.
Bailey encourages other patients by sharing his experiences and this advice: “I tell them there is always good in the bad. While it is easier to focus on the negativity, because there is more of it, look at the good of getting involved and meeting new people.”
NORD is honored to tell Bailey’s story as part of the 2015 Portraits of Courage celebration.