Jared Kuper has Type 1 diabetes, Cyliac disease and Eosinophilic Esophagitis. He's also allergic to practically everything, including glucose. He turns 12 today.
One morning in April 2009, Jared woke up for school feeling fine. Within an hour, his mom, Laura Kuper, was rushing him to the hospital as he bobbed in and out of consciousness.
As Jared's condition got worse, he started speaking gibberish, Laura recalls. Then he stopped breathing and his head fell back. As Laura made an emergency stop at a fire department to get paramedic help, Jared momentarily came to, said "Mommy, I'm okay," then just as suddenly went into a coma for four days.
The paramedics took Jared and his mom to the hospital, where she was told in the waiting room the boy might not survive. He did.
"He came out of the coma and asked me why I didn't know ahead of time," Laura said. "I should have known all the signs because I'm in the medical field."
Laura is an emergency medical technician.
In the days leading up to his coma, Jared was not showing excessive fatigue, using the bathroom, wetting his bed or drinking lots of fluids — the typical signs of diabetes. Looking back, Laura now realizes one symptom that could have prevented the frightening episode, even though there's nothing she or anyone could have done to prevent the diabetes.
"He was emaciated, he looked like a Holocaust survivor," she said. "When you see someone every day, you don't always notice gradual weight loss."
"I should have noticed," she added.
Back to School
Laura said her son went back to school shortly after being released from the hospital and quickly started educating his class about the disease. He is a youth ambassador to the American Diabetes Association, a public speaker and an accomplished fundraiser.
Jared's family, friends and teachers soon learned that Type 1 Diabetes is a chronic disease, diagnosed when a person's pancreas does not produce enough, if any, insulin to move sugar into cells where it is stored for energy. It is typically diagnosed in young people.
Jared checks his blood sugar levels about 20 times a day by drawing blood with a finger prick and touching a glucose meter. His parents wake up in the middle of every night to do a blood sugar test while Jared sleeps.
Jared receives a daily insulin shot and he usually wears an insulin pump to help keep his glucose in check throughout the day. "It's my pancreas," he says. But it's not a solution, he still needs to keep an eye on glucose levels because the disease can be so unpredictable.
Sometimes, his glucose levels free fall and there's no amount of food or Gatorade to recover him. He risks coma or death, but there's an emergency shot in these situations.
Sometimes his glucose levels skyrocket, which could result in blindness or nerve damage that results in limb amputation. There's an emergency shot in these situations, too.
Jared says he knows how to keep his condition under control, most of the time. "I get better at knowing myself every year," he said.
If he's feeling ill, he can sip Gatorade, eat something or increase the dosage administered by his insulin pump to keep glucose levels at a reasonable level — somewhere around 110 to 160 milligrams per deciliter. Normal glucose levels for people without diabetes are typically 80 to 120.
Friends, Fundraising and Family
Over the last few years, Jared has learned to rely on friends and teachers, in the absence of family, to keep him safe in emergencies.
"If a friend knows me very well, they'll know to ask 'how do you feel?'" Jared said. "Some of my friends know better than teachers."
Jared says a couple friends in particular know exactly what to do if he where to say, "I'm not feeling well, get help." In this case, it means calling a parent, grabbing the right shot or dialing 911.
But these are worst case scenarios and Jared doesn't overwhelm himself in paranoia or despair. If you met the kid, chances are you wouldn't realize he had diabetes. Instead you'd probably notice an excellent vocabulary, cute smile or football gear (if you catch him around practice).
"There's nothing I can't do," Jared said.
All things considered, Jared is doing more now than most 12-year-olds.
According to his mom, Jared talks to recently diagnosed diabetics, gives presentations at his school and encourages local politicians — particularly U.S. Senator Mark Kirk and Congressman Robert Dold — to support diabetes research.
"Jared's feeling is that education is more important than the money," Laura said.
His latest fundraiser, the Step Out and Walk to Stop Diabetes, is scheduled for Sunday, Sept. 30 at Didier Farms in Buffalo Grove at 10 a.m. The free registration starts at 8:30 a.m. and early arrival is encouraged, Jared's fundraising usually brings out a crowd.
"Jared started a trend in Northbrook like I've never seen," Laura said. "All the kids want to be a part of it. They all come to the walks, they put it on their Facebook."
Along with his own public speaking and education work, Jared's teenage sisters have helped too — introducing Jared to friends, educating their fellow Glenbrook North students about the disease and promoting his fundraising.
"There's a lot we've gone through, when someone's down, there's someone helping them stay up," Laura said. "I'm very lucky, my kids are great to eachother."