Hannah Guevremont is a typical junior at Saint Raphael Academy. She plays on the girls basketball and volleyball teams, and enjoys the bowling club, ping pong club, and Lasallian Youth. She even has a part-time job scooping ice cream. And even with that busy schedule, she has found the time to act in the recent drama performance, “In the Forests of the Night.”

Just three days before the performance at Saints, there was trouble during a rehearsal.

“My blood sugar was high all day and then it was low the next hour, then it was high. It was crazy. I was onstage, and I was like, if I don’t get off stage right now, I’m gonna pass out.”

It wasn’t nerves, as one would expect. Hannah has juvenile diabetes, also known as Type 1 diabetes. It is something that she must monitor 24 hours a day.

“Some days, it’s just so much harder,” she said. “Every day is different.”

Yet it doesn’t stop her from being an active teen. Hannah’s next biggest challenge occurs this summer. The Juvenile Diabetes Research Foundation’s (JDRF) chose Hannah as Rhode Island’s delegate for their 2023 Children’s Congress in July.

 

Learning Curve

Hannah was diagnosed with juvenile diabetes the summer she was 11 years old. It was a scary time for her and her family, not to mention a huge learning curve in how to care for herself.

Type 1 diabetes is most often diagnosed in childhood and adolescence, and currently, there is no cure. Those with the disease must learn to control their blood sugar through insulin injections, diet, and close medical monitoring.

While she relied on family members for her injections over the summer, the fall posed a new challenge. Hannah began her middle school years at Saint Teresa School in Pawtucket, still learning about the disease. There were times she wouldn’t be able to take a test because her blood sugar was too low. It also interfered in other ways. “I was in the nurse’s [office] three, four, five times a day. My blood sugar was high, my blood sugar was low. I had to learn how to give myself a shot, which I never had to do before, or the school nurse had to give me a shot.”

Sometimes, it got to her. “But I think today, because of that, I have learned how to become independent. I have grown as a person, and I think it has just shaped me for who I am today,” she said.

By the time Hannah graduated Saint Teresa’s, she was taking care of her own insulin injections. “Once I learned that I had to do this by myself and it wasn’t going to go away, I wasn’t scared anymore.”

Her acceptance came about with the support of her community at Saint Teresa’s and the local Knights of Columbus. They sponsored a walk team, Hannah’s Knights, at the annual JDRF One Walk. Together, they have raised more than $30,000 toward research.

As the community helped her, she felt compelled to pay it forward. When the pandemic affected Rhode Island, Hannah and her family organized two food drives in 2020. Altogether, they collected more than five tons (yes, tons) of food for the Pawtucket Soup Kitchen.

 

Becoming an Advocate

The uncertainty of living with the diagnosis led Hannah and her family to JDRF, a prominent resource for Type 1 diabetes research, advocacy and community engagement. JDRF has local chapters around the country to assist children and families with concerns and support them in their journey with diabetes. The Greater New England chapter, based in Massachusetts, serves Rhode Island.

Soon, Hannah became interested in advocacy on behalf of children with diabetes. There are many things that people do not understand about the disease, she said. “There’s a physical cost, there’s emotional costs, there’s a whole bunch of things that come along with diabetes.”

Children are sometimes bullied—even physically harassed—about the disease and what they must do to control it, Hannah has heard. Fortunately, she did not experience that in her Catholic schools. “I think both schools have welcomed me with such open arms and looked completely past that I have a disability.”

At 17, she decided now was the right time to push herself to advocate for others. She applied for one of about 160 spots in the JDRF 2023 Children’s Congress. The application process is competitive and very selective, requiring the submission of a long application and creation of a video about the child’s experiences with Type 1 diabetes.

The Children’s Congress brings children together as a group to speak to legislators in Washington about the challenges that they face and ask them to support more funding for research. The organization invites children between 4 and 17 years old to apply. They are a diverse group willing to share their personal stories and mutual commitment to JDRF’s mission.

Delegates will have much to do over the few days in Washington. They will meet delegates from other states, make local media appearances, and visit Capitol Hill to speak with lawmakers.

One topic Hannah plans to discuss is insulin affordability. She believes that there should be controls on costs since no one “chooses” to have diabetes. “I hope the congressmen will be able to hear and see me for who I am, and I have this disability and that is OK,” she said.

 

Future Aspirations

At the time of her own diagnosis, Hannah recounts, doctors reassured her that she would be OK, yet none of them had diabetes themselves. Except one.

Hannah remembers meeting a doctor in the hospital who happened to be covering her floor on a very busy day, even though it was not his usual area. He looked at her chart and told her that he also had juvenile diabetes. He was diagnosed on the exact same date and at the exact same age as Hannah. It gave her strength to know that others had similar stories to hers.

The encounter with the doctor also inspired her future career aspirations. “My plan after I graduate high school is to go to college to be a nurse and a diabetes educator and help younger kids [with their diagnosis].”

Having a personal experience with the disease allows her greater insight into what young patients go through when they are first diagnosed. She hopes to empower them through their shared experiences. “I want to help younger kids to be able to advocate for themselves.”

She has this advice for the newly diagnosed, which she explains very calmly and smoothly, a glimpse of how she will someday relate to her young patients.

“It gets easier, definitely, but you won’t feel like that at first. You feel alone, you feel drained. It’s so hard to get used to, but I think after a while you’ll be like, this is me and that’s OK.”

Hannah is more than OK. She is determined to use her gifts and talents to the best possible extent to advocate for others. Who wouldn’t want her in their corner?