Fighting Diabetes Together: A Father and Daughter’s Inspiring Journey

T1D dad Mitch Lenett has been living with type 1 diabetes (T1D) for over 50 years. Determined to lead by example for his daughter, Carly, now a powerful advocate in her own right, Mitch has dedicated himself to spreading awareness, raising critical T1D funding, and serving as a role model for Carly in their fight against diabetes. Together, this father-daughter duo has turned personal struggle into purpose, becoming a driving force in the diabetes community.

Mitch’s Story

For 56 years, Mark lived with type 1 diabetes. Over the years, he has witnessed numerous changes, yet some issues, such as misconceptions and a lack of awareness, have persisted. Mitch said his diagnosis at age four seemed like a lifetime ago.

“It was 1968. I was very young, but I remember my parents whispering to the doctor, who told them my life wouldn’t be very long and it would be filled with complications. What’s sad is that you still hear that kind of misinformation today.”

Looking back, Mitch described his insulin therapy and blood glucose monitoring as archaic and ineffective. “It was awful; so much has changed. Back then, they weren’t even testing blood; it was a science kit with a beaker. You mixed the urine with a tablet, and the color it turned showed what your blood sugar might be. We now know urine is unreliable for testing blood sugar. Next, it was urine test strips where you waited for the dye to turn colors. So the control was really not ideal.”

Carly’s Diagnosis

Carly was diagnosed on May 28, 2008, Memorial Day weekend. She was three at the time; she just turned 20, so she’s lived with diabetes for over seventeen years.

“We recognized the signs,” Mitch said. “Her mom was really trying to find something else that it might be, but I knew. I had a little bout of self-pity, that this was all my fault, and that lasted about a week before I decided there were only two ways to go here: play the self-pity victim. But I knew if I had that outlook, then she certainly would, so then a lightbulb went off—her life would be one of advocacy and empowerment.”

A Blessing in Disguise

As Carly grew older, her passion for advocacy inspired Mitch to use their experience to help others. “I always tell Carly, and we feel like as a family, it was a blessing in disguise that I had it because we knew what to do and we spoke the language,” Mitch said. “I often say I don’t know how people do it; it’s an extremely complex disease to manage. I don’t know how people with no experience navigate it.”

The Perfection Myth

Perfectionism can become a significant hindrance in T1D management, as numerous variables, including diet, stress, exercise, illness, and sleep, influence the condition. Striving for the perfect blood sugar all the time sets people up for frustration and feelings of failure.

Fortunately, Mitch was taught that your blood sugar is just a number; there is no good or bad number. “My parents would never let me feel sorry for myself,” he said. “My father was all about focusing on what you can do.”

“People put a lot of pressure on themselves today,” Mitch added. “The technology is great, but people can become obsessed, and now, with social media adding fuel to the fire, it’s a very stressful thing.”

“I’ve learned the empowerment piece is to control what you can control,” said Mitch.

A Father-Daughter Bond

Mitch said that he and Carly share a rare connection shaped by their daily challenges.

“We have a special relationship; it’s kind of indescribable,” he said. “It’s definitely something special, and  we don’t take that for granted.”

T1D Warriors

Mitch and Carly attend the Children with Diabetes conference, “Friends for Life,” in Orlando, Florida, annually, and Mitch said that when people see his green band, he tells them to take care of themselves. “While diabetes is unpredictable, there is a lot you can manage by choosing to eat healthy and being mentally and physically fit. I think it’s worked well for me.”

“We call ourselves T1D Warriors, always ready to fight the fight.”

Pump Burnout

While Carly is on the T:slim insulin pump and Dexcom continuous glucose monitor (CGM), Mitch wears the Libre CGM and decided to take a break from his pump. He’s gone back to multiple daily injections (MDI) and said that he’s had the best A1c’s of his life.

“We were getting frustrated with the pump malfunctioning, but it’s been a year, and I don’t want to go back to it.”

Mitch said he can’t relate to diabetes burnout, and he doesn’t think of the stress so much as the little daily frustrations. However, Carly, along with a growing number of youths today, has experienced high levels of anxiety, which, when you throw in the challenges of diabetes, can be a heavy emotional burden.

“Carly has struggled with mental health and disordered eating, which is very prevalent with girls with T1D,” Mitch said. “She was restricting insulin, went into diabetic ketoacidosis (DKA), and had multiple ER visits, where they don’t address the underlying mental health piece of it.”

Fortunately, Carly found the Melrose Center in Minneapolis, MN, an eating disorder treatment center, where she spent 13 weeks in recovery.

And now, “She’s on her comeback tour,” Mitch said. “She really is the embodiment of empowerment and wants to become her own best advocate.”

Team Carly Rocks Foundation

In 2016, Carly founded the Team Carly Rocks Foundation, a 501(c)(3) organization, which has raised over $200,000 to help children achieve their dream of attending diabetes camps. The Foundation has partnered with the T1D Exchange, musician and advocate Bret Michaels, Olympic gold medalist Gary Hall Jr., and others to provide resources for diabetes research and raise awareness about the disease.

“She is a very determined young lady who’s raised hundreds of thousands of dollars. She set her mind to doing these swim events and is now working on a book.”

Mitch said Carly hopes to pursue a career that blends psychology, nursing, and diabetes care, so others won’t have to endure what she went through.

A Father’s Advice

Drawing on his decades of experience living with diabetes, Mitch offered heartfelt advice to those newly diagnosed T1Ds and their families. The answer was the same to both individuals and parents of T1D children: “Give yourself grace; there is no such thing as perfection, and chasing it is a fool’s errand.”

He also encourages parents to be mindful of their emotions: “Kids are sponges. They pick up on everything. Don’t let them absorb your panic—remember it’s just a number, and it’s always changing.”

Together, Mitch and Carly prove that while type 1 diabetes may be a lifelong challenge, it doesn’t have to be a singular one. You are not alone, and with the right amount of strength and support, there’s nothing you can’t do.