Skip to main content

Stories of NF: Dylan T.

By January 22, 2019December 5th, 2023NF1, Story of NF

When Dylan was eighteen months old, we found out he had NF. He was failing to thrive and developed strabismus at age 4. Even after three surgeries in each eye, he lost the ability to see out of his right eye while the left one is open. He also lost all the useful hearing on the right by age eight and is now completely deaf on that side. These are nerve-related losses that have no treatment…. yet!.

Dylan also has a chest wall deformity and a tumor in his right leg. In addition he has multiple nodules in his digestive system and had a feeding tube to help with nutrition. Despite these obstacles, he continues to amaze us with his extraordinary approach to seemingly ordinary tasks.

Dylan loves to make people laugh and is drawn to others who are “different.” He is an advocate for himself and also for others who may need support. He is a strong member of the community and constantly gives back to others. He also knows the importance of promoting good mental health. Dylan actively participates in therapy and is currently researching and experimenting with natural options for treatment of ADHD, depression and anxiety, not only for himself but also for others who may be seeking healthier alternatives. Although Dylan hopes for a cure for neurofibromatosis, he knows firsthand that having great care and better treatment options made available through research, makes life more bearable for those living with NF.

Although Dylan realizes that living with NF impacts some career choices that he had, he is adapting and using the gifts he still has. That combined with his growing skills and interests, he hopes to continue to be successful in computer building and repair. Because he has NF, he has also met a lot of friends and developed a great support system through the Children’s Tumor Foundation and its supporters. This has given him the courage and hope to live the best life that he possibly can.

Dylan loves music, playing the guitar, video games, swimming and hanging out with friends. He is an electronic “geek” who loves to take apart, rewire and repair, just about anything. People being happy, makes Dylan happy. He is a proud supporter of minority views and hopes to be a great influence in discouraging intolerance.



Favorite song The complete first two albums of My Chemical Romance

Dream vacation Japan or Australia

Superpower To lower travel costs