The Children's Tumor Foundation
10/05/2026 | Press release | Distributed by Public on 10/05/2026 08:21
Story of NF: Courageous Thad
When Thad was born, the doctors told us something was "wrong" and that he might be blind. He had his first eye surgery when he was just a few days old. He would go on to have six eye surgeries in total. We were seen early on at Children's National, where his eye specialist, Dr. Mohammad Jaafar, noticed some small growths on his eyes called Lisch nodules and asked if Thad had any café-au-lait spots or freckling. He did. That led us to a genetic specialist, who confirmed Thad's neurofibromatosis type 1 (NF1) diagnosis visually when he was about one year old.
Being the mother of an amazing boy with NF1 has changed what I thought parenthood would look like. When Thad was seven, we learned he would need to have his eye removed because of complications from an optic glioma. That was a huge moment for our family.
Looking back, I think losing that eye was pretty defining for Thad. It turned out to be the best decision. Once that eye was gone, Thad was able to thrive.
Today, Thad is a thriving 7th grader. He loves Pokémon, building with Legos, playing his Nintendo Switch, and anything to do with space. He says he wants to be a YouTube star when he grows up. He's been on a therapy called Mekinist for seven years now. He's not currently in a clinical trial.
Our family shows up for the NF community every chance we get. We walk every year in the NF Walk as Team Thad, Thad spent a summer at NF Camp and said it was awesome, and I've personally taken part in NF Endurance and the Cupid's Undie Run.
A book titled "Courageous: One Kid's Story of Overcoming the Hard Stuff and Finding Joy in Their Strengths" with a drawing of a child holding a red light.Thad's journey is also the reason I picked up a pen. Everything we went through, from that first surgery to the day he lost his eye, became the seed for a children's book I wrote called Courageous: One Kid's Story of Overcoming the Hard Stuff and Finding Joy in Their Strengths. It follows a young boy who faces a diagnosis and an eye removal much like Thad's, and discovers along the way that courage isn't about avoiding hard things, it's about learning how to move through them with strength, hope, and joy. My hope is that it gives other kids, and the families walking beside them, a way to talk about fear, resilience, and hope.
All proceeds from Courageous go to the Children's Tumor Foundation, supporting the search for better treatments for NF. You can find the book on Amazon.
Favorite Song: "Babydoll" by Dominic Fike
Dream Superpower: Read my book and find out!
Favorite Food: Pizza and a cold Coke
The Children's Tumor Foundation published this content on October 05, 2026, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on October 05, 2026 at 14:21 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]