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April 3, 2024

Two Teens, Two Clinical Trials, One Vision: Living Better With T1D

Audra and Chris were blindsided when they learned their teenage son Gibson had type 1 diabetes (T1D). 

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“T1D wasn’t even on our radar, we didn’t know the warning signs,” Chris says. “The first couple days were scary and the next weeks were scarier. We were waking up several times a night like he was an infant again, but now it was to check his blood sugar.” 

Their 13-year-old daughter Clara lives with a different reality. After Gibson was diagnosed, the rest of the family took the test to determine whether they would develop T1D. Both parents and eldest daughter Elsa were in the clear. But Clara’s result revealed that she would one day develop T1D.

Clara has thought about it a lot and sometimes goes into a “slight spiral” wondering whether one thing or another might lead to her diagnosis. But mostly, she tries not to worry about it. 

“I think I’m less stressed about it than my parents,” Clara says. “I try not to overthink it and to just accept that it’s going to happen one day and that’s okay.”

Their doctor shared that this meant both kids could participate in research at BRI. Eager to contribute to findings that could help make life better for people with T1D, both siblings eventually joined clinical trials.

“I thought we would just be another number in the study, but it’s not like that at all,” Audra says. “The research team is so knowledgeable and supportive. They’ve provided so much education about T1D, both from their medical expertise and, for many of them, lived experience.”

Gibson participated in the DREAMT study, examining a medicine called abatacept, which has proven to preserve insulin secretion for some but not all people recently diagnosed with T1D. The goal was to identify markers to better understand who would and would not respond to this medicine.

Clara is part of the STOP-T1D trial, examining whether an immunotherapy medicine can delay or prevent T1D in people on track to develop it. Her participation involved receiving medication through an IV for several hours, during which time she watched Sherlock and The Great Pottery Throwdown and might have done a little homework at some point. She teases her brother for getting FOMO (fear of missing out) when she goes to BRI without him — and they both know that everyone who participates in clinical research makes an important difference.

“Those first few months with Gibson were overwhelming and such a dramatic life change. With Clara, we feel more prepared knowing what’s ahead,” says Chris. “We hope these research studies improve the health outcomes for our kids. But even if they don’t, we’ve gained so much from the knowledge and support of the research team. We’re so grateful for their deep commitment to improving people’s lives.”

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Gibson, BRI Research Participant

Why I Participate in T1D Research

My name is Gibson and I love playing Dungeons and Dragons. I am on my school’s math team, speech and debate team, and acted in my first school play this winter. I’m also a research participant at BRI. 

I got COVID-19 when I was 13, and my parents started to worry when I didn’t get better. We went to the doctor and they ran some tests. A little while later, my dad got a call saying that my blood sugar was very high and I needed to go to the hospital. I had T1D.

I felt panicked at first. I had never been to the hospital and I didn’t really know much about T1D other than that it was permanent and foreign. It felt like a life-changing, identity-shifting realization: I would be a diabetic from then on and that was stressful and freaky.

Learning to manage T1D felt like taming a beast. The needles and pokes were intimidating at first, but I got used to them. Now, it’s just part of my routine. It makes things like exercise, food, and other activities a little more difficult, but now I am prepared and experienced enough that nothing is really off the table in my life.

I joined a research study at BRI a little after I was diagnosed. We live in the Tri-Cities and I got to explore Seattle when we came for the study visits. I made deep connections with the doctors, nurses and educators. 

They are all amazing people who always seem to know what they are doing.

When I first found out that my sister Clara would develop T1D, I felt a lot of things. I was excited at the prospect of being able to bond over T1D. I was sad for her because T1D is annoying and can have other health impacts. I also felt a slight twinge of irritation because T1D is a thing that was unique to me, and her getting it would take away that uniqueness a little.

Now she participates in research, too. I hope our participation might help to develop or understand new medicines for T1D, and that it will encourage more people to get involved. T1D research is important because anything that makes managing T1D more efficient and convenient will make life easier for those who have to live with it. And it was fun — my experience was a blast and I would do it again in a heartbeat.

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