EDGAR GOES TO WASHINGTON

Lake Bluff teenager Edgar Kelley has type 1 diabetes and an urgent mandate as a JDRF 2023 Children’s Congress delegate.

BY BILL MCLEAN ILLUSTRATION BY BARRY BLITT

Imagine living with a certain medical condition and making 180 more decisions each day about your health than someone without that condition. Diabetes research conducted at Stanford University reported that startling finding.

Thirteen-year-old Lake Bluff resident Edgar Kelley doesn’t have to envision such an arduous day. He was 11 when he was diagnosed with type 1 diabetes (T1D) in November 2021.

“I am looking forward to a cure for T1D and, before that, better and more accessible treatments,” says the affable, positive-to-the-bone Kelley, who will be an eighth grader at Forest Bluff School in Lake Bluff this fall. “It would mean a lot to me, because then I wouldn’t have to use needles anymore and I’d have a lot more time and energy to think about things besides diabetes.”

Among the scores of decisions that he has to make each day are, “How many carbohydrates should I consume at breakfast, lunch, and dinner?”; “Would it be safe to exercise based on the data my continuous glucose monitor just sent to my phone and Tandem Control IQ pump?”; and, “Do I have to alter my outdoor plans today because of the weather conditions?”

Earlier this year, the Juvenile Diabetes Research Foundation (JDRF) had to make big decisions, selecting 165 children, ages 4-17, from a pool of nearly 800 applicants to serve as delegates July 9 to 11 at the biennial JDRF Children’s Congress (est. 1999). Youth delegates from 50 states, along with representatives from Washington, D.C., Australia, Canada, Israel, the Netherlands, and the United Kingdom, will gather in our nation’s capital and help members of Congress understand what life with T1D is like and why research to fund life-changing therapies until a cure can be found is critical.

Kelley was chosen, no surprise. U.S. senators from Illinois, Tammy Duckworth and Dick Durbin, along with U.S. Representative Brad Schneider, will get to know Kelley quite well and learn all about his typical day.

“The JDRF Children’s Congress is important because it brings people together and raises awareness in the government so that laws and bills can continue to be passed that support people with T1D,” Kelley says. “It’s hard to live with TID, but being together with a group of amazing kids like the JDRF Children’s Congress gives me hope for the future and what we can accomplish together.”

Kelley and his fellow delegates will also call on their members of Congress to renew the Special Diabetes Program (SDP), which is an important federal program that supports research to prevent, treat, and cure T1D. The SDP is currently funded at $150 million per year and is set to expire at the end of September. Con gress must renew the SDP to ensure research progress continues.

The Children’s Congress delegates will also advocate for afford able insulin.

“One of the things they say is, ‘Diabetes is an invisible disease,’” says Edgar’s mother, Margaret Kelley.

Edgar Kelley

“Edgar is thriv ing, but most people don’t see the oceans of vigilance and preparation that go into him being able to thrive. It means a lot to us to feel seen and to have an opportunity to share the bravery and responsibility that goes into managing type 1 as a young person.”

Edgar Kelley loves to ski and golf, play pickup basketball and football, wakeboard (he learned to do that last summer), pedal his mountain bike, and talk snazzy sneakers or cool cars with anyone. Last winter, in the upper Midwest, he and other campers weathered minus-60-degree wind chills while polar-plunging into a lake— after a chainsaw had to be used to break the icy body of water.

This past May, in markedly warmer temperatures, he went canoeing for days with another group and slept in a tent at night.

Edgar Kelley vs. diabetes has become industrial-strength vacuum vs. wispy dust bunny, no contest in each pairing.

He stands 5-foot-6, thanks to a recent six-inch growth spurt.

“He’s grown considerably, inside and out,” Margaret Kelley says. “It was impressive and incredible, how well Edgar responded to being backed into a corner by type 1 diabetes. He came out of it by being persistent and staying positive.

“Edgar is not fragile. He’s not sick,” she adds. “He’s still an active kid who likes to laugh.”

And a kid who has learned a ton about himself since T1D first attempted to disrupt his childhood 20 months ago.

“I discovered that I’m more capable of dealing with this than I thought I would be and that I can tolerate pain,” says Edgar Kelley, adding his head pounds and his eyes hurt when his blood sugar is high, and that it feels like armies of butterflies have invaded his stomach (“a combination of nervousness and intense hunger”) when his blood sugar is low.

His team—Margaret, dad Jonathan, and sisters Gweneth, 10, and Pauline, 8—will accompany him to Washington, D.C. next month and watch him officially transform from kid to young man as he enters the Capitol Building. That home team and its extended family have helped raise money for T1D research, as well as raise awareness about the disease by speaking in their communities and on social media.

“T1D research and programs are important to me because advancements in technology mean better management,” Kelley says. “Better management means being able to do more things. I’d like to go one day without thinking about my diabetes, and I’d like to eat on that day without thinking about carb-counting.”

That day will come. He’s sure of it.

Kelley stands in his family’s kitchen in Lake Bluff, fielding another question from a visitor, this one inquiring about the expectations of Edgar Kelley’s diabetes battle 10 years from now.

“There will be a cure by then,” he says. The 13-year-old isn’t kidding. Isn’t laughing.

For more information about the Juvenile Diabetes Research Foundation, visit jdrf.org. For more information about the biennial JDRF Children’s Congress, visit cc.jdrf.org.