March 10, 2020, KLAMATH FALLS, Ore. – Known as their own personal Doomsday “Diagnosis Day,” March 17, 2015, stays in the mind of Klamath Falls parents Abbie and Jason McClung. Nearing the fifth year since their son, Finn, was diagnosed with Type 1 diabetes (T1D), Abbie remembers spending the evening in Sky Lakes Medical Center emergency room, wondering what was happening with her little kindergartner as he went on to spend four days in the hospital.

Finn now is on his way to becoming a T1D spokesperson, recently spreading awareness about T1D to students in the Oregon Health & Science University (OHSU) School of Nursing — Klamath Falls Campus at Oregon Institute of Technology, “Oregon Tech.”

Now 10 years old, Finn can easily explain that Type 1 diabetes is an autoimmune disorder in which the body does not make insulin, the hormone that regulates blood sugar. It is not related to diet or exercise. It can be diagnosed at any age, but 50% of diagnoses are in children. If you ask Finn what happens when things “get bad,” he may simplify it to less energy, stomachaches, possibly throwing up, or that feeling you get when a rollercoaster drops. But it’s more serious than that and is a daily struggle of maintenance and adjustment that’s currently not preventable or curable.

Over the last five years, Finn’s T1D Footprint measures 1,820 days living with T1D; 1,037 hours of sleep lost; 7,886 finger pricks; 10,220 insulin needle injections; 201 insulin pump site changes; 136 continuous glucose monitor site changes; 1 medical alert dog; and now his first presentation as a T1D advocate.

Following his T1D warrior mom’s example, Finn gave a presentation to OHSU nursing students at Oregon Tech about living with T1D. Raised to educate, empower and advocate for the world’s understanding of T1D, Finn shared his diagnosis story, what it’s like to live with Type 1 diabetes, and the symptoms of low and high blood sugar.

Shari Brandsness, an assistant professor of clinical nursing in the OHSU School of Nursing, organized Finn’s visit to her sophomore nursing class.

“This is a course to understand chronic disease as a lived experience,” said Brandsness. “My goal is that they understand that it’s not just a disease for them to take care of, it’s a person, and a family, and a community that is being affected by a disease. It’s taking it and putting a different focus on it. This is really looking at the person and the family and how it is affecting them.”

Having shared with the classes in three previous years, Abbie was honored to pass the advocacy torch to Finn.

“The definition of loneliness for me is when in a desperate moment I have to slow down and educate the very medical professionals I need to save us,” shared Abbie. “That is why I love talking to future nurses about the daily realities of managing blood sugar in children and how to recognize signs and symptoms so that a diagnosis isn’t missed.

“We know that if a medical professional can take a moment in an emergency situation to possibly identify a T1D patient or presenting diagnosis before administering care, it can be life-saving. Finn wears an insulin pump and a CGM [continuous glucose monitor], which can be easily identifiable for T1D, but our hope is that these nursing students will take what Finn shared and be able to recognize some of the other signs of T1D also.”

Spreading Awareness

Attending Pelican Elementary with his younger brother, Oliver, Finn works with his teacher and nurses each day to maintain healthy blood sugar levels.

“The nurses at Pelican have been amazing,” Abbie said. “They have a good system down; they work with him on managing his blood sugar throughout the day in a way that is the least impactful on his education. All the staff and teachers know he has diabetes and who to contact if he needs medical assistance. They have juice boxes in the classroom in case he is experiencing a low blood sugar. The nurses are also frequently in touch with me with questions or changes with his schedule that potentially could affect Finn’s blood sugar or care at school. Daily it is a real balancing act of food, exercise, hormones, and also being a normal 10-year-old growing boy.

“I’m certainly not grateful for Type 1, but I am grateful for the insulin others have to ration (some die anyway), the technology people spend years fighting the system for, the dog who is our right hand man, the child who has the resilience to face this like a little warrior, and the community of people who get it. We’re honored by how receptive these future OHSU-Oregon Tech nurses were of learning more about T1D and are confident they will save lives with this knowledge.”

Four year ago, Finn’s best friend Titus entered his life and the medical alert dog is trained to smell when Finn’s blood sugar levels are in danger. Even with the medical devices, Titus has proven his worth a hundred-fold by alerting when Finn’s CGM and finger prick tests show normal, but yet less than 15 minutes later show dangerous levels. That 15-minute advance warning allows time to take preemptive measures instead of reactionary ones.

Finn drawing up 85 units of insulin to change his own pump at midnight.

Finn presenting to OHSU-Oregon Tech Nursing students.