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“I give it everything I’ve got. I make the most of it.” – Isaiah Lee

Sometimes something remarkable happens in life. For Isaiah Lee that time is now.

 

A sophomore at Holly Springs High School in Holly Springs, North Carolina, Isaiah is a contestant on American Ninja Warrior, season 15. In fact, the production team for the show was so impressed with Isaiah, they asked him to compete in season 16, too!

 

Isaiah was diagnosed with VHL in August of 2019 at the age of 12 after his eye doctor discovered an eye tumor—a retinal hemangioblastoma. His mom kicked into Mama Bear mode and together they learned all they could about this rare disease. He accesses care at the University of North Carolina Cancer Center where the team keeps a close eye on any other potential manifestations.

 

Isaiah reports that it was scary when he first learned he had VHL. “People don’t know,” Isaiah adds, “We didn’t know it existed at all.” He has since focused on learning more about VHL. He says he’s not a science nerd but likes to understand what’s happening with his health.

 

Isaiah was a soccer player before he got involved in Ninja training. After discovering the sport with friends, he quit soccer and now trains 4-6 hours per week in gyms uniquely designed for honing his Ninja Warrior skill set. Based on the Japanese show called Sasuke, the American show features athletes who must use strength, balance, and agility to navigate a challenging obstacle course. To succeed takes grit and tremendous athleticism, all of which Isaiah has to a high degree. Isaiah and his mom, Cheri Lee, traveled to California to shoot the episodes for season 15 this spring. While on set, Isaiah received schooling on set along with other ninja friends who are minors.

Similar to the VHL community, the Ninja community comes together to support one another. Isaiah reports making friends with the other Ninjas even though they are competing. Unlike the other Ninjas, however, Isaiah has to navigate the course with vision from one eye instead of two. He has learned to adapt by turning his head as needed. People are always amazed to learn that he’s competing at this level with decreased vision.

 

His parents are one thousand percent behind him. His mom is proud of him, even though she admits that she and the doctors worry about protecting his eye. While on our Zoom call, Cheri wrapped her arms around his neck and leaned her head in over his shoulder. Isaiah grinned and told us, “She’s always there for me. Always supports me.”

Isaiah recognizes how training on the course gives him focus. He reports feeling different when he’s on the course. “I’m not worried about anything. There’s a feeling of confidence.” Dealing with a rare disease like VHL is stressful for people of all ages, and Isaiah is no exception. He says the worst part of VHL is having to get scans. “Sometimes they can be scary.” Isaiah works through the fear and shifts his attention to getting the word out. This Ninja Warrior wants to make sure the world knows about VHL.

 

Isaiah will be featured on American Ninja Warrior this summer – We will circle back when the final date is confirmed! His goal has been to bring awareness to VHL whenever he can and is making use of his time in front of the camera to educate the public about VHL.

 

We wish you all the best, Isaiah, and look forward to cheering you on this summer!