Arevalo part of JDRF Childrens' Congress

Diabetes

“It’s hard because I don’t have any friends that are diabetic here. There aren’t that many people here that have diabetes. In the bigger cities everyone has diabetic friends and they all go to the galas for JDRF and do stuff together, but there’s just not that many people around here.””

Lucy Arevalo, Type 1 diabetes sufferer

FORT MADISON – A 16-year-old Fort Madison girl has set her sights on Washington D.C.
Lucy Arevalo, a FMHS student and daughter of Allison and Alfonso Arevalo, has Type 1 Diabetis and is taking her story to the nation’s capitol.
Arevalo is part of the 2023 JDRF Children’s Congress that will take on some of the top politicians in the country advocating for funding for Special Diabetes Program.
The program is a part of the National Institute of Health’s effort to combat the disease that strikes mostly children when the T-cells in the body attack the pancreas and inhibit the natural production of insulin.
Artificial insulin has to be introduced based on carbohydrate intake at every meal. Insulin is also introduced throughout the day when needed to combat high blood sugar concentrations.
Arevalo is one of two youth from the Juvenile Diabetes Research Foundation’s Nebraska Iowa Chapter who were chosen by JDRF, the leading global organization funding Type 1 Diabetes (T1D) research, to join a delegation of their peers and celebrity advocates in Washington, D.C., this summer at JDRF 2023 Children’s Congress from July 9-11. Arevalo and a 10-year-old named Reece, will join more than 160 other youth from across the country to meet with their members of Congress and other key decision makers to inform them of the critical role they can play in supporting the T1D community.
Throughout the event, these youth—ages 4 to 17—will participate in leadership and character-building programming, interact with T1D role models, and engage in a number of activities on the Hill, including attending a Senate hearing to share personal testimonies that highlight the challenges of living with T1D and the need for continued Federal funding through the Special Diabetes Program (SDP).
Arevalo said it was hard to commit to the advocacy but she said it’s important.
“It’s hard because I don’t have any friends that are diabetic here. There aren’t that many people here that have diabetes. In the bigger cities, everyone has diabetic friends and they all go to the galas for JDRF and do stuff together, but there’s just not that many people around here.”
She said the disease doesn’t get in the way of everyday life, but she said there are times that it gets hard to focus.
“When I walk around a lot it goes low and I feel bad, and sometimes it goes high like in show choir. It always goes low right before I go on to perform and then I have to drink, like, five juice boxes and then I feel sick when I’m on stage.”
She said the new technology, including her Tandem Insulin pump and her Dexcom Glucose Monitor, have made things much easier for people with Type 1 diabetes. The two serve as an artificial pancreas of sorts based on algorithms and digital communication.
Arevalo rarely must prick her finger anymore unless the readings on her monitor are extremely high or low.
Finger sticks were the norm before funding out of the NIH and JDRF and other Type 1 diabetes advocacy groups produced the pumps and monitors. Newer technology includes nanotechnology including injectable chips, inhaled insulin, and smart gadgets that read blood sugar through the skin, rather than invasive finger sticks.
That’s what Arevalo is going to Washington to advocate for. She said a cure would be wonderful, but it seems unrealistic considering the price of insulin, so she is advocating for continued funding to improve therapies for those suffering with the disease.
Arevalo was diagnosed with the disease when she was six years old after excessive thirst and other noticeable signs, including weight loss or stagnancy, bed-wetting, and headaches.
She was suffering with ketones, but wasn’t in ketoacidosis with a blood sugar of close to 600 and her local doctor sent her to the University of Iowa Hospitals & Clinics immediately.
Arevalo plays golf and show choir and regularly attends a diabetes camp in Boone, called Hertko Hollow, which is a camp for kids and teens.
"This is definitely hard to live with, but it’s getting easier and it would definitely get better if we can renew the Special Diabetes Program so we can keep getting technology that makes it easier while we don’t have a cure,” she said.
“I don’t even really know what a cure looks like because it seems so far away. It’s like it’s not even possible to me.”
Allison said diabetes is now a way of life for her.
“Dexcom is a game changer, and I don’t want to say she’s pessimistic, but she’s realistic. I don’t think she’s like, ‘Oh I wish there was a cure for this’, she’s more like, ‘I wish I didn’t have to count carbs all the time’,” Allison said.
Lucy’s family had planned to move a 5K JDRF run that was taking place in Burlington into Fort Madison, but COVID sucked all the energy out of that effort.
There may be events planned in the future to help put a spotlight on area children suffering from the disease, but those are yet to be determined.
Arevalo said she doesn't plan to do anything with political science or advocacy as a career. She'd rather go into fashion, but she said she plans on continuing to advocate for herself and others like her.