LUBEC — So you think you know what diabetes looks like? Maybe you have a picture in your mind of an elderly, overweight woman, sitting in a wheelchair. Or a hefty man, smoking like a chimney. Maybe you’ve read that it is preventable — that the fat-clogged, carbohydrate-rich diet of many Mainers has produced an obese population, many of them with diabetes.
That, however, is Type 2 diabetes.
This is Type 1: Ayla Zanoni, 3, wearing an orange sundress with matching elastics on her ponytails. She has on purple sandals and carries a Barbie doll by one leg. Sitting on her mother’s lap, she counts the buttons on Mama’s blouse.
She asks for an apple but needs an insulin shot first. Ayla’s older sister, Zoie, only 10 years old herself, pricks Ayla’s finger to determine her glucose level.
Daddy rubs her tiny arm and injects her, something so routine in Ayla’s life that she doesn’t even stop chewing her apple.
Cindy Hale of the Maine Center for Disease Control and Prevention’s Diabetes Prevention and Control Program said recent survey data revealed that 7.8 percent of adults in Maine are diagnosed with diabetes — about one in every 13 people.
Hale said no statistics are kept on children with diabetes in Maine, but based on national data, she estimates it is one in every 400 or 500 children.
A lifetime disease
Ayla Zanoni lives on an organic farm Down East in Lubec. She is one of Dante and Jessika Zanoni’s five children — four girls and one boy. The nightmare the family has lived through since the child’s diagnosis in January 2008, at just 19 months old, will never end, her mother, Jessika Zanoni, said.
“She will be insulin-dependent for the rest of her life,” Zanoni said. “So far, in her three short years of life, she has been subjected to 4,360 finger and toe pricks and been on the receiving end of 3,150 injections of insulin. Ayla is so full of life, and such a character. I can’t tell you how many times I have cried alone at night, wondering why this would ever happen to such a great little soul.”
The first indication the family had that something was wrong was when Ayla began bringing a tiny teacup, from her play tea set, to each family, member looking for a drink. “One morning she just wasn’t breathing well. Her respiration was about twice as fast as it should have been,” Jessika Zanoni said.
A trip to the emergency room led to a diagnosis of a cold, and the family was told to use a vaporizer.
“We held her all night,” Zanoni recalled. “She was vomiting, and by morning her breathing was worse. It was rattling. Her face was completely white. She was dying.”
They went to Lubec Medical Center where staff immediately called an ambulance and the child ended up at Eastern Maine Medical Center in Bangor.
“A normal blood sugar range is 70 to 110,” Zanoni said. “Ayla’s was over 400. I sat in that ambulance and could hear them working on her, heard them say ‘We’re losing her. She’s fading.’”
On constant alert
It took weeks for Ayla to recover and weeks for her parents to get used to the new routine of blood tests and insulin injections. Today, Ayla gets 10 to 20 finger pricks a day and at least six injections a day.
When a toddler falls asleep, most parents are relieved. Not the Zanonis.
“That means an automatic blood check,” Jessika Zanoni said. She will prick her daughter’s fingers every two hours throughout the night. Ayla won’t even wake up. If she needs an insulin shot or a sip of juice through a straw to raise her sugar level, Ayla dozes right through it, drinking in her sleep. “For her, this is normal,” Zanoni said.
But it isn’t normal for the rest of the family.
“We have spent the last year and a half just trying to cope and survive this,” Jessika said. “Ayla had two very serious hypoglycemic seizures that shook me to my very core. Both happened while everyone was asleep, and the last was almost a year ago, but only six days after the birth of our youngest daughter. That is when I stopped sleeping for more than two hours at a time. I remember holding her as she seized, Dante on the phone with a 911 operator, begging for her life and the seizure to stop.”
This constant vigilance has taken a toll on the family.
“I feel all the kids have been robbed of a part of their childhoods,” Jessika said. “Seeing my other children crying hysterically as their little sister is rushed away, dying in an ambulance … a part of their innocence and belief that Mom and Dad can make everything better is gone.”
The Zanonis said they needed to make Ayla’s story public. “We chose to lay it all out for you, and not sugarcoat anything. We need you to understand why we need a cure for diabetes now. We can’t wait. Ayla can’t wait.”
The Zanoni family will be walking in the Juvenile Diabetes Research Foundation’s “Walk to Cure Diabetes” on Saturday, Sept. 13, in Portland, with a family goal to raise $1,000. They said there are two ways to help: join the Hope for Ayla team or send a donation to the JDRF. The family also has created a video of Ayla’s illness at www.youtube.com/watch?v=9kI1JFUV1OY.
• • •
Diabetes mellitus (sometimes called “sugar diabetes”) is a condition that occurs when the body can’t use glucose (a type of sugar) normally. Glucose is the main source of energy for the body’s cells. The levels of glucose in the blood are controlled by the hormone insulin, which is made by the pancreas. Insulin helps glucose enter the cells.
In diabetes, the pancreas does not make enough insulin (Type 1 diabetes) or the body can’t respond normally to the insulin that is made (Type 2 diabetes). This causes glucose levels in the blood to rise, leading to symptoms such as increased urination, extreme thirst and unexplained weight loss.
Source: Nemours Foundation’s Center for Children’s Health.