When Jennifer Lange bought Little People’s Preschool in Naples from a woman who happened to have diabetes, she never expected that finding a cure for the disease would become part of her mission.
Soon after becoming the owner and director of the school, a family with a diabetic three year-old came to her with a desperate plea. The family could not find a preschool facility that felt capable of caring for their daughter, who was the youngest child in Florida at the time with an insulin pump. Lange did not hesitate to accept the child into her program and educate herself on what would be required to care for her.
Four years later her own daughter, Cami, was diagnosed with type 1 diabetes.
Four year-old Cami was just getting over a cold when Lange noticed that she was continuing to not feel well and appeared to be losing weight. Over the next week, other symptoms began to appear such as vomiting after sweets and increased thirst and urination. After being potty-trained for two years, Cami began having accidents. Noticing her child’s extreme weakness at a St. Jude’s Trike-a-thon being held at the preschool, Lange realized that her daughter was suffering from more than a cold and took her directly to her pediatrician where the disease was diagnosed.
The facts
Formerly known as juvenile diabetes, type 1 diabetes (T1D) is an autoimmune disease where the body’s own immune system destroys the cells of the pancreas that produce the hormone insulin. Insulin converts sugar (glucose) and carbohydrates into energy the body needs to live. In type 2 diabetes (T2D), the body originally produces too much insulin to respond to high blood glucose levels but eventually the insulin that the body does make becomes inefficient. Insulin takes the glucose into the cells for energy. Without this transport, glucose builds up in the blood and the cells, which need the glucose to survive, become starved. The complications of both diseases can result in infection, organ failure, loss of consciousness (contributing to accidents), stroke, coma and death. T1D is incurable because the body cannot make insulin at all. In T2D, there is an opportunity for management and prevention of progression of the disease through diet modification, weight loss and medication. T1D used to be referred to as juvenile diabetes because childhood is when it commonly is diagnosed.
Living with the disease
After Cami’s diagnosis, the family that Lange originally supported by accepting their diabetic child into her preschool became a great source of support and hope for them. Lange also credits JDRF staff member Sarah Rankin for spending hours with the family providing strategies for living with T1D.
Lange describes management of the disease in a four year-old as a “rat race,” and not as simple as counting the carbohydrates and calculating how much insulin she would need to inject into her child. “Emotions, illness, exercise, hormones all affect how insulin is metabolized,” she explains. “The most terrifying time was at night. My husband would check her at 11:00 p.m. or so and I would wake her at 2:00 a.m. to make sure we hadn’t given her too much insulin. It’s crazy: Insulin is what her body needed to stay alive, but if I overdosed her, it could also kill her.” If Cami’s glucose reads too low, Lange must give her some juice and retest to until her level is acceptable.
New challenges
The school years provided unique challenges. Cami began kindergarten with her first insulin pump at Naples Park Elementary, which at the time did not have a full-time nurse. She required frequent visits to the school clinic to test her blood glucose and bolus her insulin pump based on the results. Lange fought to get a full-time nurse at the school and for Cami to be able to have her pump managed in the classroom so she wouldn’t have to worry about her getting weak on the way to the clinic. Lange would attend all field trips with her so that she could manage her pump off school grounds. Sleepovers at friends’ homes were not an option.
By the time Cami reached Pine Ridge Middle School, she was in charge of her own testing, counting carbs and bolusing insulin. As an adolescent, her body image and desire to conceal the pump became an issue. She also began traveling with her club lacrosse team, which added even more challenges to her care. The growing child, along with the adrenaline, running and excitement of a vigorous sport can make insulin levels even more unpredictable. Lange found that Cami’s adjustment to high school, combined with her academic, social and sports schedule, diverted her attention from conscientious self-management of her health and her glucose readings temporarily got out of control. Now in her sophomore year at Barron Collier High School, Cami is keeping her glucose on target and is “living and loving life,” according to her mom.
Coping in college
Tami Balavage has already faced that fear; her son Michael has T1D and is a sophomore at the University of Florida. Diagnosed at age 16, after about a year of fatigue, gastrointestinal symptoms and about three months of weight loss and increasing thirst and frequent urination, Balavage credits Gulf Coast High School nurse Deb Ramos with providing her family the reassurance they needed by communicating with the family on a daily basis.
Balavage says that the diagnosis was much harder for her husband and her than it was for her son because he had felt sick for so long and was feeling better with treatment. “For us as parents, the ever present worry is that there will be a horrible complication,” she explains. “We had to change eating habits, buying habits, be prepared to take walks at 3:00 a.m. to bring down a high number or to sit and wait to bring up a low (number).”
Being diagnosed only a couple of years before he was set to go out on his own, Michael decided he was going to manage this disease from the very first day, Balavage says, not only by learning to test his glucose and administer his insulin, but by accepting that for the rest of his life, he would always have to carry these supplies, learn how to sayno to the second slice of pizza, learn when and when not to exercise, to develop a new love for orange juice, and accept that sleeping through the night was a thing of the past.
In college, she says, “he carries the same challenges with him today as when he was first diagnosed. This disease requires attention for every second of every day.” Currently, his blood glucose levels have not required him to set an alarm to check his levels at night but if they were to become unstable, he would require an alarm to alert him.
The families of both Cami and Michael have used their experience to help others living with diabetes. Michael’s sister, Kristi, is in medical school at the University of Florida and spent a year working with diabetes researcher Dr. Todd Brusko. Tami Balavage started the local nonprofit Help A Diabetic Child Foundation with the mission of providing glucose testing supplies to children in need and financially strapped college students who may be managing their disease independently for the first time. “Diabetes is a very costly disease,” Balavage states on her foundation’s website. At an average daily cost of nearly $25 per day for the necessary supplies and medication, “these costs have a direct and negative impact on one’s ability to manage impact on one’s ability to manage this disease properly.” By providing these necessary supplies to families in need, Balavage hopes to reduce the stress and fear parents have of the avoidable complications of diabetes.
Being an ambassador
Cami Lange is a youth ambassador for JDRF and provides support by talking to newly diagnosed children and assisting families with learning about their insulin pumps. Jennifer Lange has been involved with JDRF since the year of Cami’s diagnosis as a volunteer with the annual Walk to Cure Diabetes, co-chair of its annual Hope Gala held in March and as a member of the board of directors. The world’s largest private funder of T1D research, JDRF also provides education and support for families and schools. JDRF ensures that the schools that T1D children attend are safe and accommodating their needs by providing school advisory toolkits for the educators and administration.
“I think being a JDRF ambassador is a special opportunity for kids like me because I get to tell my story to people and explain how rough type one diabetes has made my life, but also how it has made me a stronger person,” Cami says. “The JDRF supporters I’ve met over the years have given me strength and hope that the cure will be found one day.”
This article was originally published in the November 2014 issue of Neapolitan Family.
Click here for more information on SWFL Diabetes Organizations.