FLORENCE — While Caleb Warnock, 6, of Florence has many playmates at camp, his best friend may be the one he carries in his pocket and calls Dexter.
That is Caleb’s nickname for his Dexcom, a continuous glucose monitor, or CGM, that transmits his blood sugar to a receiver that he carries in his pocket. The CGM can show which way his glucose is headed and can head off emergencies and help fine-tune glucose control, which can ultimately prevent complications in years to come.
When Dexter says his sugar is high, he takes more insulin, and when it’s low …
“I come to Mommy and she gives me a piece of candy,” said Caleb, who has had type 1 diabetes for two and a half years and whose father, Christopher, was diagnosed at 18 months.
Caleb was among the 33 children with type I diabetes sharing stories that only others with diabetes could understand, laughing and joking about needles and counting carbs, at the Diabetes Foundation of Mississippi’s Camp Kandu, held Saturday and Sunday at Twin Lakes campgrounds near Florence.
According to the Mayo Clinic, type 1 diabetes, once known as juvenile diabetes or insulin-dependent diabetes, is a chronic condition in which the pancreas produces little or no insulin, a hormone needed to allow sugar (glucose) to enter cells to produce energy. Rates of type 1 are rapidly increasing, in Mississippi and around the world.
“I thought my dad and I were the only ones who had diabetes, but then I came here and found out we weren’t,” said Caleb, who helped his cousin, another type 1, overcome his fears of sticking his finger to test his blood sugar.
If you are a child living with diabetes, that may be the most powerful message of this unusual camp, which has been meeting every spring and fall for 15 years.
Suddenly — maybe for the first time in your life — you find out that you’re not the only one. Not the only one having to stop what you’re doing to check your blood sugar. (Always, it seems, at the most inopportune moment.) Not the only one having to struggle with what to eat. Not the only one whose life is a series of finger sticks and injections, and who must contend with the complex calculus of a disease that requires constant adjustment of insulin pump doses divided or multiplied by carbohydrates and exercise.
And not the only one trying to be a regular kid in spite of it all. At Kandu, amid the games, races and karate lessons, everyone stopped to check their blood sugar together. A few needed a little juice, and then picked up right where they were.
For some, diabetes is an exclusive club whose members intimately understand one another’s challenges. Sarah Fowler, 11, of Jackson, was diagnosed seven years ago (and is friends with the daughter of the Clarion-Ledger reporter who shares her name). She has come to Camp Kandu for six years and is in training to become a counselor.
“There are not that many of us with type 1, so when you meet others you immediately know a lot of things about each other,” said Sarah, amid the joyful sound of kids who, often for the first time. are meeting others like themselves. “I’ve made at least three lifelong friends here, because you have the same struggles and you go through them together. Sometimes you have more of a connection with them than with people without diabetes.”
Hoping to remain without diabetes, however, are those being tested for antibodies that would indicate that they are at risk for developing the disease. Under the impassive eyes of the fish and deer adorning a rustic room at the lodge a toddler cries as a researcher tries to take his blood for the Type 1 Diabetes TrialNet Study, which is funded by the National Institutes of Health and is investigating interventions for the prevention or delay of type 1 diabetes.
Families of children with type 1 can learn who among them might have the antibody and how to avoid or postpone the onset of diabetes.
Fowler said she was, as a counselor in training, looking forward to being able to help more people like herself. “I had someone last year come to me when their sugar was low and showed them which foods in their backpack would bring it up to normal but not make it go too high,” she said, adding that the magic formula was two glucose tablets.
But it’s not only children who make connections. Cher Crowley, a territory manager for OmniPod tubeless insulin pumps and pump educator at the camp, encountered a child whose family had lost employment and health insurance and who therefore had not seen an endocrinologist in months.
“Nicki Nichols, whose child Bella has type 1, just came in and gave the mother not just hope but also a roadmap,” Crowley said. “It’s frightening to have a child with type 1 and no insurance.”
And parents say they finally have a place to share their deepest uncertainties with other parents. “Having parents you can text or Facebook with a question as simple as, My child is starting swimming, and how can she check her blood sugar?” said Kristen Fowler, mother of Sarah Fowler, a swimmer. “We learned we had to give her 15 grams of carbs before practice or she’d get low. Unless you have a child with type 1 in that activity you are not able to answer that question.
“It’s given her confidence knowing there are all these kids like her. Camp has made her more open to trying new things, like new pump infusion sites.”
Sarah Joy Sudduth, 13, of Starkville treasures her independence and shares that with friends at camp. “I tell them that diabetes is just a part of life and that learning to check their own blood sugar can keep them from having to depend on others,” Sara Joy said, on the sidelines as a karate instructor chopped through a stack of flaming boards.
It’s an appropriate image for those with diabetes — for what may look impossible is in fact something that they can do.
Hence the name, Kandu. “We were brainstorming and one of our former employees came up with the spelling of can-do,” said Irena McClain, associate director of the Diabetes Foundation of Mississippi.
One camper knows what she wants to do with her life. “I want to become a pediatric endocrinologist, because my doctor is one and she is my role model. She has type 1, too.”
And that, it seems, is the Kandu spirit.
The Diabetes Foundation of Mississippi cares for all children adults in Mississippi with diabetes. Contact the foundation at 601-957-7878 for more information.
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