Ayden Haselhorst, age 17, South Dakota

Ayden Haselhorst’s journey with type 1 diabetes (T1D) began a decade before his diagnosis, when he was first screened by TrialNet for autoantibodies that signal increased risk.

Ayden’s mother, Michelle, who was diagnosed with T1D when she was five, learned about risk screening while volunteering as a nurse at Camp Gilbert, a diabetes camp in South Dakota she had attended as a child. She began screening Ayden and his older sister, Aubri, as soon as they were old enough.

While Aubri, now 20, tested negative for diabetes-related autoantibodies, Ayden tested positive for one. When he was screened a year later, he tested positive for two autoantibodies. Individuals with two or more of these autoantibodies are in the early stages of T1D, and their lifetime risk of a clinical diagnosis (stage 3) approaches 100 percent.

Ayden Haselhorst, pictured here with his mother, Michelle, and sister, Aubri, used the years before his T1D diagnosis to prepare. Michelle says, “Each year without a type 1 diabetes diagnosis was a gift. When Ayden was diagnosed, he wasn’t scared or shocked, and we never ended up in the hospital.” (Photo by Andrea Marie Photography)

Ayden continued to be monitored by TrialNet every six months. When he was three, he joined TrialNet’s Oral Insulin Prevention Study, where he took a daily insulin capsule.

“After the Oral Insulin study, we kept a close eye on Ayden’s blood sugar, especially if anything seemed off,” recalls Michelle. “In November 2019, his blood sugar slowly began to rise. By then, we had a plan in place and were watching his carb intake. We had several years to talk about what we would do when he was diagnosed.”

Ayden was officially diagnosed with T1D when he was 11. “Each year without a type 1 diabetes diagnosis was a gift,” recalls Michelle. “He had time to learn strategies for managing his carbs and preventing DKA (diabetic ketoacidosis, a life-threatening condition caused by a shortage of insulin). When Ayden was diagnosed, he wasn’t scared or shocked, and we never ended up in the hospital.”

Ayden, a high school junior, spends his free time restoring old cars and trucks.

He’s also an accomplished drag racer. (Photo by Andrea Marie Photography)


 

Living in a rural area of South Dakota, Ayden and his family faced some special challenges. Access to diabetes care is limited, and Michelle drove Ayden more than three hours to meet with the endocrinology team at Sanford Health in Sioux Falls. But she says the long drives were worth the effort.

“The TrialNet staff at Sanford was great to work with,” Michelle said. “Ayden really thrived there. He was very shy as a child, but he’s not anymore. The nurses were friendly and always took the time to explain everything and make sure we understood what was happening.”

Michelle says she’s particularly grateful for Kurt Griffin, MD, Sanford pediatric endocrinologist and clinical researcher. “Dr. Griffin was incredible and always very willing to answer all my questions.”

Michelle is also thankful for the resources and support available to families with T1D. “My experience was so different. We didn’t have access to resources like TrialNet when I was a kid. For Ayden, if there was any chance to delay a diagnosis for a few years, I was determined to take advantage of it. There’s a world of difference between learning you have T1D at age five and being diagnosed at 11.

Michelle currently serves as the Diabetes Program Coordinator for the South Dakota Department of Health, where she works to increase public awareness and create partnerships with organizations to improve the health of people living with diabetes across the state.

Ayden is a high school junior who enjoys woodworking and welding. He also spends his free time working on old cars and has purchased three vehicles that he’s currently restoring. He’s also an accomplished drag racer.

When helping a child with T1D thrive, Michelle says she’s learned that knowledge is power. “A sudden diagnosis can be overwhelming,” she says. The information and support she and Ayden received early on helped Ayden prepare for his diagnosis. “If you have a child at risk, remember that with preparation, planning, and education, you can navigate the journey with confidence.”