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Stories of NF: Eli D.

By February 22, 2018February 28th, 2024NF2-SWN, Story of NF

Eli was diagnosed with an eye condition called PHPV as an infant, which resulted in a detached retina at 12 months of age. Later, at age 5, he was diagnosed with NF2. His pediatrician may not have caught this diagnosis, but I had a gut concern and took him to her dermatologist for another opinion. After a skin biopsy and genetic testing, the NF2 diagnosis was confirmed. After genetic testing on me and Eli’s father, it was also confirmed that Eli’s case was spontaneous.

Eli is an amazingly strong kid who refuses to let anything slow him down; his strength and passion for life is an inspiration to many. Despite being blind in his left eye, having tumors on his spine, and bilateral tumors on his acoustic nerves, Eli is currently unstoppable. He is a black belt in Taekwondo, loves soccer and basketball, and rollerblading and swimming. He is fast, fearless and all boy!

Inspired by Eli’s resilience and determined to fight for his future, our family has become actively involved in fundraising for CTF, and this year I put my whole heart into taking on the role of NF Walk, Kansas City Organizer. Determined to raise more awareness, we received proclamations from our city of Shawnee, KS, as well as Kansas City, MO, and the state of Kansas. Our local newspaper did a story as well. It is our mission to do any and everything we possibly can to be proactive in our son’s future, including traveling wherever needed for specialists.

Eli’s upbeat personality, love of life & sense of humor help us all! He is compassionate, caring, and a friend to all. We honestly couldn’t be prouder or ask for a better son, little brother, or friend. He is truly amazing and an inspiration!

-Hannah, Eli’s mom



Superpower To fly, because it would be cool!

Favorite food Cookies N’ cream ice cream

Hobby Playing with friends, video games, Nerf guns and riding roller coasters.