By Matthew Bernat
Kids with type 1 diabetes are among the estimated 200,000 people young people living with the disease in the United States. Each year, roughly 40,000 people are newly diagnosed with the disease. A diagnosis is challenging, especially for kids with type 1, but many are thriving and living inspirational lives.
Diabetes Self-Management and JDRF have a shared vision: to promote the advancement of type 1 diabetes research by spotlighting the dedicated sugar type 1 diabetes champions from across the U.S. In this series, we asked some young patients about friends, new tech, friends, advice and more.
I was 1 year old when I was diagnosed with type 1 diabetes, so I do not remember life without it. I am so thankful for my amazing parents, doctors, and support team (I call all of them my Circle of Hope since they fill me with so much hope for the future of type 1 diabetes). Early on, my parents helped me to get an Animus insulin pump so that I didn’t have to get shots. I loved this pump since I swam and played in the water all the time! I was also an early CGM user. Before pre-k, when my parents were looking for a new house, they chose to move near a school that had a full-time nurse. I stayed there from pre-k to 8thgrade. I saw the school nurse every day at lunch and snack time to check my blood sugar and bolus. During middle school, I participated in the Stanford clinical trial for the Medtronic 670G that really helped my blood sugar numbers stay in range and helped my family and I sleep better at night. For the first two years of the clinical trial, my mom was not yet ready to give up using the Dexcom share system (where my blood sugar numbers were visible on her phone at all times), so I had to have the Medtronic Mini-med sensor (clinical trial) on one arm and the Dexcom sensor on the other arm. Finally, in 8thgrade, my mom and I were comfortable enough to stop using the second Dexcom sensor. This was a big leap for both of us. When I was looking at high schools, I think it is so funny how I did not even ask about if there was a nurse at each school because I had gained the skills to keep my blood sugar numbers in range by myself. Just after I started my freshman year of high school, I started Looping. This was super helpful for me because I could keep my numbers in range as much as on the 670G, while I cut the time I spent thinking about my type 1 diabetes in half and then in half again. Now, I don’t have to check my finger any more, and I can customize my settings so that it works best for me. I know that technology has improved so much since I was diagnosed, but we still need a cure!
The hardest part about managing type 1 diabetes is how I can never get a break from it. I have been living with type 1 diabetes for 422,236,800 seconds (over 13 years) without ever being able to take a break. Whenever I want to take a break, I am reminded that I can’t or else I will have an unhealthy low or high blood sugar. I can turn this challenge into a positive by reminding myself to have fun and live life to the fullest. It always makes me feel really proud how I am able to live my best life – even with this chronic condition without a cure.
I became involved with the JDRF when I gave my parents the idea for the Royal Ball, a fancy gala for the entire family to raise money for a cure. When I was really little, I noticed that my parents would often go to JDRF events without me. I thought this was super unfair since I was the one who had type 1 diabetes. I asked them about this, and they saw that I had a point. This was how the Royal Ball was born. The Royal Ball was a themed, fun, and family-friendly gala that my family put on. We did this for six years and raised over $1 million in total!
In 2018, my family and I were the Greater Bay Area Chapter Hope Gala Honorees (“Living and Giving Award”), and I was the Fund-A-Cure speaker. The event raised over $2.8 million, and there were over 550 guests. I am also excited to be a 2019 Children’s Congress delegate this summer. I write a blog for the JDRF about my Looping system and life with type 1 diabetes called “Looping with Jamie” (it used to be called “Diary of an Artificial Pancreas”). In 7thgrade, I led the San Domenico Cares One Walk team that had over 100 members and raised $54,000. Like I mentioned earlier, my family and I organized six Royal Ball events that raised over $1. I have also been a Youth Ambassador for JDRF, and I am working on a poetry book to raise money for diabetes research.
I love using the Loop system. I am currently using the Loop with a Medtronic 523 pump, the Dexcom G6 sensor, and a Riley Link. In June of this year, I am going to try out the Omnipod Loop system, and I am really excited to try out a tube-less pump! I have been using it for almost this whole school year, and I think it is so cool how it helps keep my blood sugar numbers in range, while it dramatically reduces my time spent thinking about my type 1 diabetes. Now, I don’t have to check my finger anymore, and I can customize the settings to work for me!
They support me in everything I do. My family will bend over backwards to make sure that I am safe, healthy, and happy. I love hanging out with my friends, and I am so grateful that they see me as a whole person instead of just my type 1 diabetes.
I love to play the violin, spend time with friends and family, travel, try new and crazy things, and practice fencing. I am really excited to play Tchaikovsky’s Violin Concerto in D Major and Severn’s Polish Dance this summer! I want to travel to all seven continents (three down and four to go). I have gone indoor skydiving, and I want to stay in an ice hotel. I just started fencing after earning my second-degree black belt in taekwondo, but I am having a lot of fun with fencing.
In my opinion, all meals are diabetes-friendly as long as I bolus appropriately for them. My favorite meal is dim sum, but this is often tricky since I also have celiac disease (an autoimmune disease where I can’t eat gluten). Many times, the chefs use the same wok to cook everything, so there tends to be lots of cross-contamination at dim sum restaurants.
Don’t let type 1 diabetes hold you back from being unapologetically you, and do what you love!
Source URL: https://www.diabetesselfmanagement.com/about-diabetes/diabetes-kids/jdrf-type-1-diabetes-teen-fundraiser/
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