The Children's Tumor Foundation
10/16/2025 | Press release | Distributed by Public on 10/16/2025 08:27
Story of NF: Dylan N.
This Story of NF was submitted by Dylan's mother, Kristy.
Dylan was diagnosed around a year old. We noticed cafe-au-lait spots, and he had a bowed right tibia. His pediatrician referred us to a geneticist, and she confirmed the diagnosis. We were surprised and worried about what this meant for Dylan. It was hard at first trying to find the right resources and doctors. It was also difficult explaining his condition to our family and friends.
Dylan's main impact has been orthopedic. He has worn an orthotic brace on his right leg since he was a year old. He fractured his tibia and fibula riding his bike at 6 years old and required surgery. He had a metal rod and plate placed in his right leg. He will require additional surgeries as he gets older to correct his ankle. He is not able to play contact sports or do some of the other activities with his friends, and that is very difficult for him. However, he doesn't dwell on that and isn't slowed down! Dylan says NF is what makes him unique and doesn't think it will impact his future plans.
He has the rare orthopedic issues that accompany NF1. These complications aren't as common and therefore not as much information is available. When he fractured his tibia and fibula at 6, we weren't sure what was next. We were told that the surgery he needed had a success rate of only 30%. We were terrified but his team of doctors at the Shriners Hospital Greenville were very supportive. The surgery was a success and Dylan is able to walk but still requires the use of an orthotic brace. This moment taught us to appreciate every day and we are thankful he has such a great care team.
Dylan is 10 years old and he enjoys golf and swimming. He loves video games, especially Super Mario, Sonic and Minecraft. He wants to be a YouTuber and make video games. He has an excellent group of supportive friends. He enjoys school, his favorite subject is math. He loves Imagine Dragons and got to see them in concert with his friends this past summer.
Favorite Song
Believer - Imagine Dragons
Dream Superpower
Teleportation
Favorite Food
Pasta
Fun Fact
I got to pet an otter at the Georgia Aquarium! Otters are my favorite animal.
The Children's Tumor Foundation published this content on October 16, 2025, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on October 16, 2025 at 14:27 UTC. If you believe the information included in the content is inaccurate or outdated and requires editing or removal, please contact us at [email protected]