A Union family is working to raise awareness and show support for their son, Carter Kopf, 8, a student at Central Elementary, and others suffering from Type 1 Diabetes (T1D).
On World Diabetes Awareness Day, Nov. 14, students and staff at the school and others in the community wore blue to show their support as well. November also was Diabetes Awareness Month.
Melissa Harness, Carter’s mom and a nurse, said there are many people who don’t understand that Type 1 diabetes is an autoimmune disease and not something her son will grow out of.
Carter requires insulin to survive, but besides his body not producing insulin he’s a normal child, she said. He’s in a bowling league, plays baseball and active in other outdoor sports.
Carter is the son of Melissa and Eddie Harness and has two younger siblings. The family has made it their mission to inform, educate and support others facing the disease.
Carter was diagnosed with T1D at 3 years old. Harness said most children are not born with the disease and doctors still aren’t entirely sure what causes it.
“A lot of research has shown that there is usually a health trigger, or it tends to follow a big health issue,” she said.
For Carter, that turned out to be true. He was brought to the hospital with severe stomach pain, which ended up being a leaking appendix.
During routine blood work, doctors discovered that he had an elevated blood sugar level. A hemoglobin A1C test, which shows averages over a three-month time period, confirmed that Carter had T1D.
Harness said that a;though she knew the appendix issue was serious, she was more worried about the diabetes. Her father had a bilateral leg amputation and eventually died from complications caused by the very same disease.
“My 3-year-old being diagnosed with the same thing that I saw an immediate family member die from was devastating,” she said.
The family spent a week at Mercy Children’s Hospital, St. Louis, where he had an appendectomy and then began learning how to count carbohydrates, what to do for high and low blood sugar, how to check blood sugar and how to calm a 3-year-old during the four to six shots and six to 10 finger pricks he had to receive per day in the beginning.
At the hospital, Harness said she was blessed to be put into contact with a nurse whose daughter also had T1D.
“She became my lifeline,” she said. “Any 3 a.m. moment where I was terrified because I couldn’t wake up my son, it was her on the other end of the line.”
Since Carter’s diagnosis, the family has become involved in fundraising and advocacy for the Juvenile Diabetes Research Foundation (JDRF).
When Carter began preschool in Pacific, the foundation sent out volunteers to help teach staff how to care for him.
The family moved to Union when Carter began kindergarten at Central Elementary.
The school has been “so accommodating,” Harness said.
“Teachers and staff are on board with everything they can do to help him,” she said.
Each year, Harness visits Carter’s class to read a book about Type 1 Diabetes and to answer any questions they might have.
On World Diabetes Day, staff and classmates wore blue in his honor.
This year is the first Carter is riding the bus to and from school. Harness created a laminated card for the bus driver to explain what to do in case of an emergency.
If Carter’s blood sugar is not in a normal range at the end of the school day, he gets picked up from school rather than riding the bus.
“I want to stress my thanks to the school for what they’ve done and for wearing blue to support Carter,” she said. “It’s amazing what they’ve done to help him feel supported.”
Learning to Cope
When Carter was first diagnosed, Harness said she slept with her hand on his chest to monitor his breathing. Now, Carter checks his own blood sugar up to six times per day.
He also has a Dexcom, a continuous glucose monitor. The device attaches to his skin to check his blood sugar every five minutes and delivers the results via bluetooth to both his mother and father, grandparents and to the nurses station at school.
Depending on the results, Carter knows how to react. However, if his blood sugar gets too low, he could become disoriented and not recognize it, Harness said.
“The device has literally saved his life more times than I can count,” she said.
Carter wears an insulin pump with a waistband to hold the device. The pump keeps Carter from getting insulin shots, as it continually gives a dose of insulin. He gets a boost if he eats carbohydrates, which would affect his blood sugar.
Once the family grew used to their new normal, Harness said they created a team of supporters called Carter’s Crew.
The team has conducted numerous fundraisers, from a dueling pianos event to raffles, drawings, dine to donate events and more, all to help raise funds to find a cure for T1D and to support a trip to a diabetic friendly camp, Camp EDI (Exercise, Diet and Insulin).
The camp is run by pediatric endocrinologists with trained nurses and counselors and provides a “priceless trip for a child to learn about themselves and their disease,” gain self-esteem and create new friendships.
Harness said when there is a cure for the disease, Carter’s Crew wants to know that it contributed to the cure.
Carter’s family also reaches out to any local family they hear of who has a child diagnosed with T1D. They provide a support system with phone numbers, a starter basket with snacks, alcohol swabs, glucose tabs, a diabetic alert bracelet, pamphlets and anything else they have found helpful along their own journey.
“We want to be that 3 a.m. person to provide support when you can’t call your doctor, and a friend might listen, but they can’t understand the way another mother can,” Harness said.
The family also provides social media sites that offer support and answer questions for adults, as well as websites where children can find support of others with the same disease.
Family, friends and other supporters also take part in the JDRF walk each year, as well as an annual family retreat the foundation hosts.
Harness urges others who may need support to contact to reach out to her. She can be reached at 314-540-1169 or firstname.lastname@example.org.
“There’s no way I could have made it through this journey without others’ support,” she said.
As for Carter, Harness said he was very happy that classmates and others wore blue to support him on World Diabetes Day.
“I don’t really like having diabetes, but sometimes it’s kind of fun . . . (because) I like extra snacks,” he said.
But if there’s one thing he could tell people about his disease, it’s “that I want a cure.”