'She's the Most Mighty Little Kid': How One Family Helps Their 5-Year-Old Navigate Type 1 Diabetes
Maggie Sexton was diagnosed with Type 1 diabetes when she just was 15 months old. Now, her mother and support dog work together with medical intervention to act as her pancreas.
Maggie Sexton was 15 months old when her mom, Emily, began to notice issues that she didn't realize at the time were symptoms of Type 1 diabetes (T1D). She was soaking through two or three diapers, waking up overnight, wanting to eat and drink more, and she was fussy. Maggie also didn't look like herself, says Sexton. "We didn’t notice it at the time, but looking back at pictures you can see her face looked different," the mom of three from North Wales, Philadelphia, says.
Their pediatrician had initially attributed the symptoms to a child's normal growth, but after concern about ongoing symptoms, the doctor put a urine collection bag in Maggie's diaper to check the sugar in her urine. "Within 20 minutes, we had the results from the urine sample," says Sexton. "It was 740. We learned that was extremely dangerous and very high. Normal would be 100. The doctor told us he was fairly certain it was T1D, and we had to go to the children's hospital immediately."
At the hospital, the Sextons learned that their daughter had been in diabetic ketoacidosis, which occurs when the body, deprived of insulin, burns fat for energy instead, producing acids called ketones. High levels of ketones can poison the body when glucose levels are high and can be fatal. "Once she was safe and out of that stage, we were filled in, and she was admitted," recalls Sexton. Sexton and her husband were then given a crash course on the ins and outs of T1D and how to essentially keep their daughter alive. "We learned how to do the syringe shots and weigh food and give a certain amount of insulin and tweak insulin," she remembers.
Creating a Support Network
The initial scare and hospital visit was a lot to take in, but Sexton felt fortunate to have Maggie's two older sisters, Olivia, 14, and Ruby, 11, to pitch in and an extended, tight-knit family to help out. "Our family was very supportive right off the bat," says Sexton. "They were willing to learn everything, take classes with us, and learn the ins and outs of T1D."
Beyond that, Sexton was on a mission to find other parents—and kids—who were going through the same thing. "It was really important for me to find a group for me, to relate to those parents, and for Maggie to see other kids like her," she says. "So, through social media and word of mouth, I was able to find my groups."
In fact, it was late at night, while perusing a Facebook group, that Sexton was able to connect with other moms and find solutions that would keep her from staying up all night watching Maggie sleep and being nervous to go to bed herself. "We were just relying on fingersticks, so my alarm was set anyway for every two to three hours to make sure her blood sugar was all right," she recalls. When she shared this with another mom, she was encouraged to ask for new equipment, like a Dexcom continuous glucose monitor (CGM)—a tiny wearable that measures Maggie’s glucose levels every five minutes and sends data directly to her parents' smartphone. "That's where I learned about all this technology before Maggie's endocrinologist and team told us about it," notes Sexton.
Now that Maggie is 5, Sexton feels the community she created has been a "godsend" for navigating life with a T1D child. That's one reason the family is dedicated to providing support for others first starting down the path of managing T1D.
Sexton recalls how when Maggie was just 2, she showed a recently diagnosed 14-year-old family friend how to use her pump. "Maggie put hers on and we basically taught our friend’s daughter who was a teenager how to use hers," says Sexton. "She was relying on Maggie."
The proud mom also shares glimpses of Maggie's journey on social media and often receives messages across platforms from parents and kids in the same boat. They all commend Maggie's bravery, which has helped to bolster their own. "We are told that Maggie's videos help people," says Sexton. "That's the whole point of our presence on social media—building online community, advocating for T1D patients, trying to raise awareness, and helping one another out."
Building a Bond With Filly, the Medical Support Dog
In addition to Maggie's older sisters, which Sexton credits as being amazingly supportive and helpful since the diagnosis, the family now relies on a 3-year-old medical support dog named Filly who Sexton refers to as her "pancreas partner." "Having a diabetic alert dog isn’t for everyone," says Sexton. "It is a lot more work. You have to constantly do training to make sure the dog stays on her toes, so she stays crisp and on top of her game. But it is totally worth it for our family."
The sweet mini golden retriever is trained to sniff a low or high blood sugar from Maggie. In fact, Filly's skills are so sharp that she will often alert the family to Maggie's low or high blood sugar before their Dexcom does, notes Sexton.
But Filly is also a lovable, playful family dog who Maggie calls her "baby." "They sleep together every night," says Sexton. "She's a cuddle bug, she's our family pet. Filly and Maggie do have a special bond. They've had it since the beginning, and they're best buds."
Maggie Continues to Inspire
Given the support and knowledge they now have, it would seem the Sextons have it all figured out. And while they do have their routine down, Sexton says there are still good days and bad days. "When Maggie was first diagnosed, I remember so many people telling me 'don't worry, it gets easier,'" she recalls. "But it can still be so overwhelming."
Nonetheless, she looks to her 5-year-old as a source of inspiration. "Maggie has never known anything else," says Sexton. "Maggie is only 5, but she's so responsible for her age. I guess it's just T1 that brings that out of kids who have it. She's the most resilient and determined and mighty little kid."