Remember back to the Summer of 2020? We didn’t go anywhere or see anyone. We just constantly thought about the good old pre-Covid days? Longing for the “before” times holds even more true for my family, as my then four-year-old daughter, Emmie, was diagnosed with type 1 diabetes (T1D) in August 2020. When her pediatrician told us to go to the ER after she awoke with blue lips, I hesitated. I hadn’t even gone into Target since March. Why would I expose her to a hospital? After some serious pediatrician prompting on the phone from the hospital parking lot, Emmie and I entered the ER. Our lives changed forever that day. As an ambulance rushed us to Boston Children’s Hospital, I grieved for the life I thought Emmie would have and felt waves of panic about a disease I knew nothing about.
As soon as we returned home, I searched for connection, guidance, and advice. A benefit of the pandemic was the ability to zoom in anywhere. I joined every virtual JDRF support group I could find. Meeting other families that understood the sleep deprivation, fear, and general insanity of a T1D diagnosis gave me hope. If their kids were happy and thriving, Emmie could do the same! Emmie “met” her first T1D peers through these calls. Whether the kids were in California, Arkansas, or Massachusetts, Emmie saw others like her. The community support we found through JDRF gave us hope during one of the most trying times of our lives.
Through these JDRF zooms, I learned about T1D clinical trials. I was shocked to find out that trials can fail due to lack of participation. I remember thinking, “How are we ever going to move technology forward? How will we ever find a cure?” And by we, I meant super smart scientists. But as it turns out, those super smart scientists need us! They need T1Ds and the families of T1Ds to step up and participate in research. They literally can’t do it without us. Clinical trials gave Emmie an opportunity to take some control of her T1D. Through clinical trials she was able to contribute to science. She could be part of finding a cure!
Emmie has participated in many types of trials. She was in the Dexcom G7 trial in June 2021, Tandem Control IQ for Littles in October 2021, REDCHiP in 2022 (Reduce Hypoglycemia Fear in Parents of Young Kids with T1D) and is hoping to start a new insulin trial next month! But that’s not all for our family! Fourteen months after Emmie’s T1D diagnosis, I was diagnosed with T1D. At 36 years old, I became Emmie’s Diabestie. With two T1Ds in the house, we could double our clinical trial participation! Because I knew about clinical trials, I jumped right in. Within six months of diagnosis, I was in the TOPPLE trial through Trial Net. I followed that with an iLet Bionic Pancreas trial, and I just started INHALE-3, an Afrezza Inhaled Insulin trial.
My husband, Bob, and my four-year-old son, Callen, do not have T1D. Although Callen does love to finish off our juice boxes when we treat our lows! They have also been able to participate in trials. There are studies that are recruiting for family members without T1D. Everyone can be a part of T1D research!
Needless to say, we are a clinical trial family! This summer, Emmie was a delegate at JDRF Children’s Congress, and she testified before the F.D.A. about her experience in clinical trials. I am the CTEV, the Clinical Trial Education Volunteer, for JDRF Greater New England. I help share trial information with interested families and connect them with researchers. I’m able to share my perspective as a T1D mom and a T1D patient.
Watching my seven-year-old share her story with Senators, Representatives, and the Commissioner of the FDA brought me full circle to those early JDRF zooms. Emmie is happy and thriving! And doing her part to help T1D scientists and researchers! Clinical trial participation allows us to be a part of moving science forward. Those super smart scientists need our help to make life changing T1D breakthroughs and find a cure!
CTEV, JDRF Greater New England