Leah Shwedel is full of one-liners. Some of them are real zingers, often eliciting bursts of laughter from a crowd that is fighting back tears. Inevitably, plenty of people cry at the annual gala in Naples for Juvenile Diabetes Research Foundation (JDRF) while listening to stories from kids like Leah. It’s a reasonable response to the unfair burden that an 8-year-old carries every minute of every day while living with Type 1 diabetes.
Like any good storyteller or comedian, Leah doesn’t let them wallow in sadness. Nor will she make it easy for them to leave without making a significant contribution to finding a cure for her disease. That’s why she’s spoken at the fundraiser for three years straight, starting when she was 6 years old.
This past March, Leah took the stage, barefoot and wearing a frilly pink dress, beside her dad at the JDRF Hope Gala. Over a few minutes, she told of her grim diagnosis and how it upended her life at age 5. “Living with Type 1 diabetes is not easy,” she explained to the crowd, incorporating dramatic pauses and gripping commentary with a heart-melting lisp. “It’s totally unpredictable—kind of like my little brother.” The chronic disease essentially programs a person’s immune system to destroy cells in the pancreas that produce insulin, a vital ingredient for turning sugar into energy.
Everything changed, not only for her but for her whole family. “And it is not, and I repeat, not because I ate too much cake,” she added, dispelling the myth that Type 1 diabetes is caused by excessive sugar intake. She then demonstrated how many shots she endures over three months, revealing a gallon freezer bag stuffed with small syringes—plus three other full bags that her dad, Scott, held up beside her.
Today, Leah is one of an estimated 1.9 million people living with Type 1 diabetes in the United States alone. Currently, there’s no known way to prevent it, and no cure; just rigorous, round-the-clock management practices.
Rather than collapse under the daunting reality, Leah and her family have stepped up to change it, for themselves and everyone battling the condition. It started the summer after her diagnosis with a one-day lemonade stand that Leah ran with her cousins while visiting them in New York City. They decided to give the profits to JDRF, which led to them joining the Naples chapter of the organization. They first shared their story onstage at the March 2020 annual fundraiser. Leah appeared in a video for the virtual-only event the following year. In 2022, Leah’s mother, Jessica, agreed to chair the themed gala, designed to inspire donors to help find a cure. The event raised a record-setting $1.6 million. The family has also generated nearly $30,000 more in contributions over the past three years through fundraising walks—while building community and sharing life-changing resources among those surviving juvenile diabetes.
Of course, their hour-by-hour process has not been easy. The milestones and celebrations are snapshots of an indefinite roller coaster ride through traumatic hospital visits, sleep-deprived nights and ongoing lifestyle modifications that began with Leah’s diagnosis three years ago.
The Shwedels received the news of the disease in January, just a couple of months after Leah’s fifth birthday. She kept saying she was thirsty, despite drinking plenty of fluids. Jessica’s mother, Lynn, a retired elementary school principal, was visiting them in Naples and mentioned that insatiable thirst could be a symptom of Type 1 diabetes. She recommended getting a test if it persisted for a week. Instead, Jessica scheduled a visit with the pediatrician the next day. “I’ll never forget when she said, ‘This is the part of my job that I hate,’” Jessica says. “I just remember completely losing it.”
Because the family caught it early, Leah had not lost any significant weight or developed other common symptoms, such as blurry vision, bed wetting or fatigue. The pediatrician said this put the family ahead of the curve.
But for any parent or guardian receiving news of this chronic disease in their child—with long-term risks like nerve damage, heart and blood vessel disease, and a lifespan shortened by eight years on average—the real weight immediately follows the diagnosis: You will play primary caregiver.
The Shwedels spent three days in in-patient care at the hospital. While Leah was stable and mostly healthy, the stay facilitated a “crash course,” as Jessica calls it, on diabetes and how to manage it. Scott and Jessica watched nurses prick fingers, inject insulin and read glucose levels taken from their daughter’s body. By day two, they were playing nurse themselves, administering shots and monitoring blood sugar round the clock, under the watch of the experts. At the time, Jessica was still nursing their son, Seth, who was barely more than a year old. She drove 30 minutes back and forth daily between Seth, who was at home with Lynn, and Leah in a Fort Myers hospital.
The smell of the insulin made Jessica sick, and she didn’t feel ready to leave the hospital, calling it “the most overwhelming thing in the world.” But after day three, they were sent home with their vulnerable child and a mountain of medical knowledge that Leah’s life depended upon. “You are acting now as your child’s pancreas,” Jessica says.
The daily goal, and endless routine, with Type 1 diabetes is keeping blood sugar within a targeted range. In most bodies, this plays out on autopilot thanks to the pancreas releasing insulin. With diabetes, the body’s immune system destroys the insulin-producing cells in the pancreas—requiring the individual or caretakers to take the wheel with daily injections and diet. (While the cause of Type 1 diabetes remains unknown, research points to possible genetics, viruses and other environmental factors.) “This is a 24-hours-a-day, 7-days-a-week, full-time job that never gets any breaks,” says Scott, who works as a root canal specialist by day.
He recalls finding a rhythm of daily management somewhat quickly after Leah came home. But it required a full lifestyle shift, such as shots in the morning before breakfast and Jessica or Scott checking on Leah and reading her blood levels throughout the night, which they still do.
Jessica decided to attend preschool with Leah that first spring after diagnosis, sitting in the building daily for six weeks to monitor her daughter and inject insulin. For kindergarten, there was a school nurse, which allowed Jessica to stay home but remain in frequent communication with the school about Leah. The pandemic created a unique opportunity for Leah to stay at home, which allowed for Jessica’s close oversight. The family opted to continue that through the spring of 2022, with Leah returning to the classroom in August—a fraught decision for her parents. Sending her out of sight to things like diving and acting classes—Leah’s favorites—is still nerve-wracking. But Leah now knows how to administer her shots, if needed, which brings some comfort.
To help their daughter, the whole family has embraced a low-carb diet, something they discovered after roughly a year of diabetes management. Scott and Jessica say it has significantly reduced the high and low swings in Leah’s glucose. It is also a prominent example of the commitment and solidarity of every family member, including a reluctant 5-year-old brother, Seth, who is also helping his sister by taking part in a trial that studies kids who don’t have juvenile diabetes in hopes of developing a medication to delay the disease’s onset. “He talks about his low-carb lifestyle more than anyone else,” Scott says.
He’s the first one to sneak a handful of sugar-loaded treats when he’s away from Leah or out of the home. Recently, Jessica says, he was thinking out loud what might happen after death, as 5-year-old brains do: “‘I believe that when you die, you get adopted by another family. And I’m going to get adopted by a high-carb family.’ It’s sad but hilarious,” she adds.
Sad. And hilarious. That combination, or posture, seems to have bolstered the family, one day and one handful of shots at a time. It’s the same charm that Leah lays on thick during her speeches.