Written by Dave Yanko
Overdrive. In good ways and bad, that word speaks volumes about the life of nine-year-old Haley Kolenosky of Warman, Sask.
Haley is a champion bicycle motocross (BMX) rider. Last year, her first year participating in BMX, she won the gold medal for eight-year-old girls in the provincial finals. Watching her charge out of the gate, even on video, leaves no doubt that this girl loves speed and competition. “I’ve always really liked going fast on my bike,’’ says Haley. “I found out about BMX racing when I was racing with my dad.’’
But Haley’s pancreas works in overdrive, too. She has a rare condition called congenital hyperinsulinism, which means her pancreas won’t stop pumping out insulin even after it’s secreted enough of the hormone to regulate the sugar in her blood. The result is chronically low blood sugar. It took Haley’s doctors four months from the time of her birth to diagnose the disorder, and she just about didn’t make it. “She was unresponsive and stopped breathing when she was born,’’ says her mom, Michelle Kolenosky. “The doctors couldn’t figure out what was going on because this condition is so rare.’’
Congenital hyperinsulinism presents differently in every person who has the ailment, according to Michelle. Haley’s younger sister Aria, 3, also has congenital hyperinsulinism and her symptoms vary from Haley’s. Experts believe people carrying the specific genetic mutation shared by the Kolenosky sisters have a 50-per-cent chance of passing it on to their children.
Haley controls her illness with periodic injections administered by her mother and she checks her own blood sugar levels up to six times a day using a glucose monitor. Even at that, her blood sugar levels can become dangerously low if she doesn’t eat every one to two hours – eating slow-digesting carbs works best. She must eat more frequently when she’s expending a lot of energy, such as practicing BMX, something Haley did at the local BMX course virtually every day of the season last year. “It’s certainly a life-threatening condition,’’ says Michelle. “If she doesn’t eat or take care of herself properly, even for a few hours, things could get very dangerous.’’
So while Haley appears to be a normal, energetic girl with a wide variety of interests – she loves horses, writing and illustrating her own books, and even shooting and editing her own movies on video – she’s also a girl who understands that one slip-up could be fatal. She and her family must live with that notion every day.
On a suggestion from a friend, Michelle applied to Make-A-Wish® Canada to see whether Haley might be eligible to benefit from the charity’s programming, which is designed to fulfill wishes for children with life-threatening illnesses (Aria was too young for consideration). Michelle was delighted to find out Make-A-Wish® was granting Haley a one-week, all-expenses-paid trip with her family to Disney World in Orlando, Fla. Haley was thrilled: “I was super excited!’’ The Kolenosky family set off for Disney World in February 2020, before COVID-19 became an issue in Florida.
Animal Kingdom and Magic Kingdom theme parks, as well as nearby SeaWorld Orlando, generated hours and hours of enjoyment for the entire Kolenosky family. Perhaps not surprisingly, Haley says, “I loved the roller coaster ride best of all.’’ But it was the family’s unique accommodations and experiences at Give Kids the World Village, an 84-acre resort sponsored by Make-A-Wish® International and located about half an hour’s drive from Disney World that was the crowning stroke of the trip. “Give Kids the World was absolutely amazing,’’ says Michelle, adding the facility is run almost entirely by thousands of kind-hearted volunteers. “I think for the kids to see that these people were all there just to help make their trip amazing was just, well, it was just wow!’’
In 2019, K+S Potash Canada announced their partnership with Children’s Wish Foundation, Saskatchewan Chapter so that they can continue doing what they do best: granting young children the opportunity to realize their greatest wishes, and providing hope and joy to deserving families in our province.