Two Northwestern elementary students are adjusting to life as type 1 diabetics after the friends were diagnosed within 24 hours of each other last August, both at 10 years old.
The students, Addy Clark and Enzie Exmeyer, have leaned on each other for support over the last 15 months as they’ve received a crash course in diabetes education, which has included a lot of insulin shots, carb calculations, and more recently, insulin pumps. Now that they have the basics down, the students and their parents, Farrol Clark and Allison Exmeyer, are hoping to raise awareness of the condition.
Last summer, Northwestern Elementary School student Clark had a busy summer. She was playing outside every day and attending Camp Tycony. So when her mom noticed she was losing weight and drinking a lot of water, she thought it was due to her daughter’s active lifestyle and the 90-degree summer days.
But it was when they took a family vacation to St. Joseph, Mich., last August that Farrol began thinking it was something more. During the two-hour drive, the family had to stop at least three times for Clark to use the restroom, and over the days of the vacation, Farrol noticed Clark’s constant thirst even more.
After Clark experienced a dizzy spell that left her in tears, Farrol researched what the symptoms could be, and all signs pointed to type 1 diabetes.
Farrol called the pediatrician’s office, but the nurse wasn’t concerned with the symptoms, she said, and instead scheduled a child wellness check for the following week.
“I wasn’t comfortable with that answer. In my gut, it told me that we needed to get it figured out sooner,” Farrol said.
So, after school that day, Farrol took Clark to CVS MinuteClinic to have her blood glucose tested. The nurse tested Clark’s blood sugar three times, Farrol said, and it was so high that it wouldn’t read an actual number. It just said “high.” Clark was sent to the emergency room.
At the hospital, Clark was hooked up to a saline drip for hydration. Her blood sugar was tested again and was in the 600s. Normal levels are between 80 and 120, Farrol said. Her A1C also was tested, and it was 14.6 percent. A normal A1C level is below 5.7 percent.
Clark was diagnosed with type 1 diabetes, a condition in which the pancreas produces little or no insulin. It’s typically diagnosed in adolescence and is different from type 2 diabetes, which is far more common and thought to be caused by environmental factors, such as being overweight and inactive.
Clark was transferred to Peyton Manning Children’s Hospital in Indianapolis to be trained on insulin injections and receive an education in type 1 diabetes management.
“It was scary because we were so uneducated on it like most people. You just think diabetes is diabetes, and it’s not same. So once we got down there, they started our education the next day on dosage and nutrition and just packed our brains with all of this math and what can happen if she has too much insulin or not enough insulin,” Farrol said. “It was like bringing home a newborn again. It was so much information that you think you’ll never retain.”
Exmeyer, a student at Howard Elementary School, had much of the same symptoms as Clark. She was tired, thirsty, using the restroom frequently, and losing weight.
And like Farrol, Allison initially chalked up the symptoms to Exmeyer’s active lifestyle and getting older and taller. But one day Allison’s friend pointed out that Enzie didn’t look well, and Allison began to think something else was going on.
“I didn’t know the symptoms. I didn’t know any of that was diabetes-related. There’s no posters anywhere saying, ‘Watch for these symptoms.’ I was just thinking she’s busy all the time. She’s tired. I’m tired,” Allison said.
Allison called her grandmother, who’s a type 2 diabetic, and told her about her daughter’s symptoms. Immediately, Allison said her grandmother told her that it was diabetes, but Allison thought “no way.” After she hung up, though, she couldn’t stop thinking about it and began wondering if her grandmother was right.
“I couldn’t stop thinking about it, so I went to the school and picked up Enzie, called the doctor, and I told them about her symptoms. They said, ‘How soon can you get here?’” Allison said.
Allison took Exmeyer to her doctor. Her blood sugar was taken, and the next thing Allison knew, the doctor was saying, “Riley. Ambulance. Now.”
“They wanted to take her (to Riley Hospital for Children) by ambulance, and I actually said no. I wanted to take her. It’s sad, but all I could think about was how much money it’s going to cost because I was looking at her like, yeah, she’s frail-looking. But she’s OK. She’s fine. ‘It’s just diabetes’ is literally what I told myself,” Allison said.
Allison took Exmeyer home, packed a bag, and began driving her to Riley Hospital. But Exmeyer was worse off than Allison could have imagined, and by the time they got to the hospital, Exmeyer was unconscious. She was in severe diabetic ketoacidosis, a serious complication of diabetes that occurs when high levels of blood acids, called ketones, develop.
Exmeyer was admitted to the hospital and immediately hooked up to an insulin drip and oxygen.
“I was numb,” Allison said. “I was physically and emotionally numb. I cried a lot. I was really inconsolable.”
For two days, Exmeyer was unconscious. When she woke up, Allison was overcome with relief, but she didn’t have time to process it, as hospital staff immediately jumped to training Exmeyer on insulin injections and type 1 diabetes. Allison was told if Exmeyer had been at the hospital even just hours later, she would have died.
Allison, who has lupus, is no stranger to chronic conditions and encouraged Exmeyer to learn as much as she could about type 1 diabetes.
“They did a whole day of education, and Enzie was included in it, too. It’s her body. It’s her body, so she needs to know how to take care of it, as kind of rough as that may sound saying that to a little kid. But she has to figure it out,” Allison said.
Exmeyer was diagnosed the day after Clark.
Managing type 1 diabetes
Clark and Exmeyer both gave themselves insulin injections for the first year, and this past summer, they received insulin pumps, which they said make managing the condition a little easier, though they too come with a learning curve.
The pump has to be changed every three days, which includes filling a cartridge with insulin and changing the pump site to make sure scar tissue doesn’t form.
“We have to pay attention after we do change it to make sure there isn’t a pump-site issue and make sure she’s actually getting the insulin,” said Farrol. “But other than that, it’s a lot more manageable.”
Clark has liked it, as she now doesn’t have to give herself a shot in front of friends or go to the bathroom to do it. It's a lot more discreet.
Over the past 15 months, Clark and Exmeyer have gotten a lot of questions from their classmates. Many don’t know there are different types of diabetes and that type 1 isn’t caused by diet or lifestyle. Clark said she does her best to explain what it is and help them understand.
“Yes, I get a lot of questions,” Clark said. “It’s kind of hard to explain to them what it is because I guess they just don’t understand. They say, ‘Did you eat too much candy when you were little?’ ‘Will you grow out of it?’ ‘Oh, my grandma has diabetes,’ that kind of stuff.”
One of the things she hopes to help her classmates understand is that people with type 1 diabetes didn’t do anything to cause it.
Farrol said the diagnosis has made Clark grow up fast, and she was proud of how independent and responsible she has become.
“I think the biggest change has been Addy having to grow up faster because of it, watching her manage it herself. And don’t get me wrong, I’m here every step of the way. But she has done an awesome job with it, and I often have to remind myself that she’s only 12,” Farrol said.
As for Exmeyer, she’s striven to maintain a positive attitude and even was asked to talk to other children who are newly-diagnosed to help them learn the ropes and adjust to their new lifestyle.
“I just like to tell myself that there are others out there that are like me, and they have a lot more that they have to struggle with because some of them don’t have enough insurance to get a lot of insulin for themselves,” Exmeyer said. “There are a lot of others like me who are struggling more.”
Next year, Clark and Exmeyer will be in the same building at Northwestern Middle School, and they said they’re looking forward to seeing each other every day. The pair said it’s been helpful to have each other to lean on through it all.
The parents also have enjoyed having each other’s support.
“Even above my closest friends and family, I will call [Farrol] over anybody and just vent to her because I know she gets it,” said Allison.
Allison hoped her daughter and Clark's stories will help educate others on the signs of type 1 diabetes, such as sudden fatigue, weight loss, excessive thirst, frequent urination, mood changes, and being lethargic.
November is National Diabetes Month. For more information, visit diabetes.org/diabetes/type-1.