GOSHEN — When Kaeclin “KC” Shepard was diagnosed with Type 1 diabetes when she was 6 1⁄2, her family did not immediately grasp what that meant.
Her parents, Tony and Kari Shepard, did not realize they would spend sleepless nights closely monitoring Kaeclin’s blood sugar, or that they would need to fight her in her sleep to feed her fast- acting sugar like Smarties. They did not realize that nearly every cabinet in their home would be stocked with medical supplies, or that they would need to inject a long needle in Kaeclin’s skin every few days.
Kaeclin, who is now a 9-year-old Model Elementary student, did not realize she would no longer be able to attend slumber parties or ride her bike out of her parents’ sight.
And Kaeclin’s older sister, Khylin, did not realize she would no longer be able to share treats and would be forced to watch her little sister grow up faster than any kid should.
While the family is still praying for a cure, it has found the next best thing: a dog named Charli that has been trained to alert the family if Kaeclin’s blood sugar is out of the safe range.
“I like how she loves on me and kisses me,” Kaeclin said, pausing for a deep breath, “and how she can save my life one day.”
TYPE 1 DIABETES
It was the summer before Kaeclin’s first-grade year when her family knew something was wrong.
Kaeclin rapidly lost about 10 pounds and started demanding drinks more often. She also couldn’t make it through an entire Little League game without taking a bathroom break. Kari recognized the symptoms as type 1 diabetes because one of her close friends had been diagnosed as a kid, but she also held on to hope that it could be a urinary tract infection.
The family scheduled an appointment for tests with a doctor, but Kaeclin was rushed to Lutheran Hospital of Indiana in Fort Wayne when the results came back. A diagnosis was confirmed June 23, 2012: Type 1 diabetes.
The disease, previously known as juvenile diabetes, is typically diagnosed in children and young adults. Only 5 percent of people with diabetes are classified as Type 1, according to the American Diabetes Association.
Doctors are not entirely sure what causes the disease beyond genetic dispositions, but they know it is not caused by a poor diet or lack of exercise.
In patients with Type 1 diabetes, the immune system attacks the pancreas and the body then fails to produce insulin, a hormone needed to convert sugar, starches and other food into energy needed for daily life Type 1 diabetes is treatable through insulin therapy, which requires patients to inject doses of insulin into their body to balance factors like food, exercise, stress and emotions.
Treating the disease is a balancing act, because too much insulin can cause the body to burn too much glucose and blood sugar can drop to a dangerously low level.
Kaeclin has battled with highs and lows. The highs — which, if left untreated, can damage the eyes, kidneys, nerves and heart and can also lead to coma and death — leave her feeling sluggish and tired. The lows cause her to feel light-headed and dizzy.
During the first year of Kaeclin’s battle with diabetes, she depended entirely on insulin shots.
“Any time she ate, she’d have a shot,” Kari said. “Her diet was very limited and she didn’t get snacks very often.”
Kaeclin has become a pro at reading nutrition labels — anytime she eats something, she’s required to carefully calculate how many carbohydrates she’s ingesting.
“She went from an extremely free-willed child to having to tell Mom and Dad where she is 110 percent of the time,” Kari said. “It’s not that we weren’t parenting before, but now we have to basically be a body part for her. We’re not just Mom and Dad, we’re her pancreas.”
Eventually Kaeclin started using an insulin pump and a continuous glucose monitoring system, but the new technology still requires careful maintenance. Kaeclin is still poked with a long needle every day for the insulin pump, and that leaves tubing under the skin. The monitor requires a separate injection for the sensor, and Kaeclin still carefully watches her food intake.
A device and watch connected to the CGM allow Kari and Tony to monitor Kaeclin’s levels constantly — but the number is delayed by several minutes, unlike the nose of a dog.
That strong nose is especially good for finding the chicken bone in the trash or the squirrel shimmying up the tree in the backyard — but fortunately for Kaeclin, it is also good for detecting rapid changes in blood sugar levels.
Kari spent four months researching a reputable training company after the family decided to invest in a diabetic alert dog, coming across horror stories and lawsuits in the process.
There is no regulation of service dogs for diabetes, and some breeders have been accused of selling untrained or improperly trained dogs for upward of $25,000. But then Kari came across a place in Nebraska called Heads Up Hounds that did not have a single negative review. The organization trains rescue dogs — in return for having their lives saved, the dogs can save the lives of diabetics.
While other trainers breed dogs specifically for the job, Heads Up Hounds first accepts diabetic clients and then searches shelters within a 100-mile radius to find the perfect dog. Among the criteria: The dog must weigh between 30 and 80 pounds, be between the ages of 1 and 3, cannot be too hyper and must love treats.
Training takes several months. The clients are asked to chew on cotton swathes when their blood sugar falls or spikes, which the dogs then use to figure out when to alert.
Sometimes, even several months into training, a dog can wash out — it happened twice to the Shepards. KC first had her heart set on a yellow Lab she named HiLo, but the dog was anxious. A second yellow Lab washed out too.
But then Charli, a black Lab, was surrendered to a shelter and found by Heads Up Hounds. She passed all the tests and was even taken to a local swim school for training because Kaeclin spends a lot of time around the water at her family’s business, Shepard Swim School.
The Shepards traveled to Nebraska in late March for three days of intensive training with Charli and her Heads Up Hounds trainer. The family learned about Charli, her commands, training tips, rules and how to handle her in restaurants and public areas.
Charli came home with Kaeclin on March 29, but the training will continue for the rest of her life. Charli still gets distracted by animals, but she’s starting to listen to Kaeclin and Tony more.
Charli goes everywhere with the family except for school, but that’s the next step.
The family is working to educate the public that Charli is a working dog and it is not OK to pet her or feed her. She needs to devote all of her attention to Kaeclin and stay alert in the case of a drastic blood sugar change.
Even as Charli makes herself at home in Goshen, the Heads Up Hounds team keeps in touch with the Shepards.
“We have contact with them daily if we choose, even if it’s just for a couple of minutes on the phone,” Kari said. “They tweak things and help us adjust. They’re really with us for the entire journey.”
A DIABETIC’S BEST FRIEND
Kaeclin had always wanted a dog but her parents never agreed. Kari suffers from bad allergies — although from what she considers a miracle, Charli does not bother her health — and Tony always thought it would be best to wait until the family moved to a home with more land.
But there was no answer except for “yes” when the dog could save their daughter’s life.
“As a parent, that’s been the hardest part to deal with,” Tony said. “The fact that at any moment, any time, we can lose KC. That’s why we’re going to give her any medical device and any opportunity to have a long life.”
Charli is already picking up on dangerous blood sugar levels by alerting Tony or Kaeclin by nudging her nose into their hands. A few weeks ago, Kaeclin was at church when Charli alerted her and Tony. Kaeclin’s monitor was reading 80, but when she used a test strip to check her blood sugar, it was only 52.
“Charli notified them of a low number that Kaeclin couldn’t feel, and she was also way ahead of technology,” Kari said. “We are so thankful she caught this low, that could have been dangerously going lower.”
Kari said in the nearly three years Kaeclin has been battling the disease, she has never seen her daughter happier. Kaeclin loves to rub Charli’s belly and rest her head on top of her while she sleeps. Kari has even caught Kaeclin curled up on the floor of her bedroom next to Charli, who is not allowed on the bed.
“There’s the medical aspect to this dog, but also a special bond,” Tony said. “Diabetes is tough enough, but Charli gives her a buddy to go through it with her and help her with it.”
Charli has helped Kaeclin with a lot, she said. Kaeclin had been bullied at school for her medical equipment, and one boy in her class last year even threatened her. Since that happened, she was scared to walk upstairs alone or go to the bathroom alone. She would never enter the house first, or even wander into a different room alone, Kari said.
That changed when Kaeclin learned Charli would protect her.
“My dad walked in one night and Charli heard something downstairs and started barking,” she said. “She’s like my guard dog.”
Now Kaeclin will go upstairs by herself to get something with Charli and she goes to the bathroom alone. She even sleeps with the lights off and the door closed.
“She feels comfort, protection and has finally overcome this huge fear,” Kari said. “Who knew Charli would bring so much more to Kaeclin and our family than alerting low and high blood sugar? She is my hero.”