They call themselves the “Diabesties.”
They’re four young dancers at McGough Academy of Irish Dance in West Chester who share more than a competitive spirit and a passion for Irish dance. All four, who range in age from 9 to 12 and include a brother and sister, have Type 1 diabetes, a relatively rare disease that’s seen a 30 percent increase in diagnoses since 2002, mainly in children and teens.
It’s an odd fluke that there are four kids with diabetes in one dance school, but, says Lindsey Mayo of Lewes, DE, whose daughter Erin, 11, got her “lifechanging” diagnosis in September, it’s also been a gift. “They all have each other and they can talk about diabetes together,” she says. “They’re fortunate to be at this school where they understand the disease and do whatever they can to accommodate them.”
One reason is that the McGough staff has already had years of experience dealing with type 1 diabetes. Twelve-year-old Mairead Raley, daughter of dance instructor L. Katie Raley, has been living with type 1 diabetes for almost nine years.
Mairead, a petite redhead, is the old hand at managing her condition. She was already testing her own blood sugar and controlling her insulin at the age of four. Her “diabesties” occasionally go to her with their questions when “Miss Katie” isn’t available. “Mairead is completely independent in her own care,” says Raley, of Kennett Square. “Even in school, the school nurse doesn’t get involved. She can handle everything on her own. It’s her disease. She knows that if she’s in control of her disease, then she’s in control of her own life.”
Type 1 diabetes is a life sentence: chronic, incurable, but manageable. Unlike the more common type 2 diabetes which is usually lifestyle-driven (obesity is a prime risk factor), type 1 is an autoimmune disease, possibly triggered by environmental factors such as viruses. The body’s immune system activates to fight the “enemy” virus then for some reason goes haywire, attacking the body itself.
In the case of type 1 diabetes, the immune system targets and destroys insulin-making beta cells in the pancreas, the small, hardworking organ behind the stomach that produces the enzymes that break down fats, carbohydrates, and proteins in the diet and controls blood sugar (called glucose) that provides fuel to body’s cells. High levels of circulating blood sugar can cause irreparable damage to the body’s organs and tissues, resulting in anything from heart disease to limb amputation.
Once the body stops producing insulin, people with the disease need to either give themselves insulin shots or wear a computerized pump that delivers a steady stream of insulin under their skin.
They also need to monitor their blood sugar 24/7 which most do with a continuous glucose monitor that they wear on their arm or under the skin of the belly. Sensors check blood sugar levels at various intervals. If sugar is too high or low, an alarm sounds.
All the dancers, including siblings Liam (11) and Fiona Boyce (9) of Orange County, NY, wear blood sugar monitors. Fiona has had her diagnosis for a year; Liam learned he also had the disease less than a month ago. There may also be a genetic component to type 1 diabetes.
“When the alarms go off during classes, everyone is alert to whose alarm it is,” says Raley. “Teachers will go, ‘Erin, is that you?’ ‘Mairead, is it you?’”
It’s not unusual for the dancers’ blood sugar to dip while they’re training. Exercise, particularly the long hours of intense training they do for competitions, can dramatically affect glucose control. They may need to lower their insulin dose, eat before training, and pack carb snacks to keep them on an even keel. Low blood sugar (hypoglycemia) can cause a variety of symptoms, some alarming. “It’s a very weird feeling,” explains Mairead. “You can feel dizzy and stuff. Your hands get shaky and you feel hungry.” In extreme cases, it can lead to loss of consciousness and seizures, a condition called insulin shock.
Even at a young age, people with type 1 diabetes learn to manage the tricky chemistry experiment that their disease has assigned them. They learn when to eat and what to eat; to never leave the house without a carb snack or juice; to estimate how much extra insulin they need (called a bolus) over and above what their pump doles out depending on how active they’ll be and how many carbs will be on the day’s menus. To say the least, it’s complicated.
But for these dancers, all medal and trophy winners, the desire to excel—to ultimately hold a golden trophy on the champion’s podium—is motivation enough.
“If my blood sugar is too low or too high, I just don’t dance as good as I can. I just don’t have as much energy,” says the soft-spoken Fiona Boyce, one of five Boyce children at McGough known as “the Boyce bunch.”
Erin Mayo agrees. She doesn’t even mind the constant testing as long as she can keep dancing at her best. Even with a glucose monitor, the dancers also do finger prick blood tests for their sugar and urine tests for ketones, the chemical byproduct of the liver burning fat for fuel when glucose isn’t getting into the body’s cells. Diabetic ketoacidosis—marked by high ketone levels—can be a life-threatening emergency.
“[I don’t mind doing the testing] because I love dancing with all my heart,” says Erin, a livewire who spent much of the three days at Nemours Children’s Hospital when she was undergoing initial testing asking when she could get back to training. She had qualified for the All Scotland Irish Dance Championships and was determined to go with her best friend, Mairead. She did and placed 13th in her age group.
Unlike the other dancers, Erin isn’t on insulin fulltime yet. Her body still produces some insulin that controls her blood sugar—it’s referred to as “honeymooning.” One of the benefits of exercise—her doctors classify her as “an extreme athlete”—is that it makes what little insulin her beta cells produce more sensitive so she doesn’t need as much to process the high-glucose carbs in her diet.
If it seems like a lot of work and responsibility for kids who are barely old enough to stay home alone, it is. Their parents also shoulder some of that. At competitions, says Lindsey Mayo, the parents who appear to be focusing more on their phones than the dancers aren’t scrolling Facebook. They’re using them to monitor their kids’ blood sugar levels.
“At one competition, the kids were waiting backstage for an hour so I would run back there to give her Skittles until she got annoyed with me and told me to stop,” she admits, laughing. “We carry a bag filled with candy, juice, and water to every major and feis (dance competition).”
Even the recently diagnosed Liam and Erin seem to be taking their diabetes in stride, partly because of their personal support group. That includes not only their “diabesties” but all the dancers at McGough who, says Lindsey Mayo, never treat them as anything but normal. “They never feel different here,” she says.
“I knew a lot already about diabetes because of Fiona and Mairead,” says Liam, who recently took a first in his age group at the Putnam County feis. “I was really nervous when I got diagnosed but I got calm pretty quickly. . .I know if I have questions or problems, I can get help from my friends.”
Erin points out that diabetes is her disease, but not her identity. “It’s another part of my life. It’s not always the best thing. It’s not always what I want,” she says, “but it’s helped me be a stronger person. I’m a great Irish dancer. And I also have type 1 diabetes.”
Photo of Liam Boyce, Fiona Boyce, Erin Mayo, and Mairead Raley by Tom Keenan
