Kobi Henegan’s sister, Jade, has always looked out for her little brother. Their parents, Ron and Kiona, credit Jade for noticing the changes that led to Kobi’s diagnosis of Type 1 Diabetes (T1D) when he was just eight years old. “She noticed that he was using the bathroom a lot and thought something might be wrong,” Kiona recalled.

When Kiona took Kobi to the doctor, his fasting blood glucose was over 300. Children’s Healthcare of Atlanta verified he had T1D. “Kids are often in diabetic ketoacidosis when they’re diagnosed, which is an emergency,” she said. “Thanks to Jade, we found out before it got that far.”

Kiona said all she could think about was needles. “I was devastated,” she said. But Kobi’s words abruptly stopped her tears. “This is something I’m going to have forever, until there’s a cure. So are you going to cry forever?” His wise question made Kiona pause. It wasn’t about her, but him.

The Henegans threw themselves into a season of intense T1D education. Even extended family members, from his grandparents in South Carolina to his Aunt Glander in Maryland, downloaded the app for his glucose monitor to stay current on Kobi’s health.

However, despite close-knit family support, Kobi longed to connect with another local kid who had diabetes. They started a support group called Kobi’s Konnection. When they couldn’t find children’s books about T1D, they wrote one called “Kobi Takes Type 1 Diabetes to the Zoo.” Kobi’s advocacy led Breakthrough T1D to select him as a delegate representing Georgia at the 2023 Children’s Congress in Washington, D.C. The young man has created a new book that will be released soon called “Let the Odds Be in Your Favor: Five Steps to Never Giving Up.” He says this book isn’t just for those with diabetes, but an encouragement for anyone who needs it.

Kobi’s determination extends throughout his life as a student at Hampton High School, where he says the teachers have been incredibly understanding of how T1D impacts his daily life. He was elected 10th-grade treasurer and is active in track and cross-country.

Running adds complexity to managing his blood sugar. “I want my glucose to be at least 200 before I run cross-country, because if I’m out in the woods, it’s better to have it too high than too low,” he explained. He carries glucose tablets with him in case his sugar plummets, as it sometimes does. “His mind is not just on contending with the race, but on keeping his numbers balanced,” Kiona said. In running and in life, “Kobi’s never competing against anyone but himself.”

By Kari Apted