An unknown clown, a Vancouver doctor, the Variety Club.
Two individuals and an organization Vernon mom Nancy Wasylik is forever grateful to.
To understand how this trifecta came to be part of Wasylik’s life, let’s go back five years.
Nancy’s daughter Callie, now 10, was a kindergarten student at Kidston Elementary who, like her peers, loved to run around outside or climb around on the playground equipment.
The only thing was, Callie was tired all the time. Nancy thought she was sick, coming off a cold that she couldn’t shake. Her teacher noticed Callie wasn’t her usual energetic self.
Then Callie started falling asleep in the classroom.
“It was scary at first,” said Callie. “I didn’t know what was happening and I didn’t like falling asleep in class. I was missing out on a lot of stuff.”
This continued on and, in the summer months, Callie started getting worse. When Callie got excited from laughing, she’d lose all control of her muscle functions, collapse on the ground laughing, her eyes rolling into the back of her head.
Back in school, teachers thought Callie would be having a seizure. Nancy took her daughter to the emergency ward four or five times. All kinds of tests were performed on Callie. Nothing was found to be wrong, yet she continued to be tired and when she was tired, if she started laughing, she’d have these episodes of losing all muscle control.
Nancy was on a six-month wait list to see a pediatrician. She knew something was wrong with her daughter.
Finally, after another episode at school, the vice-principal got Callie in to see a pediatrician right away.
The doctor thought Callie had a brain tumour.
She was sent to B.C. Children’s Hospital in Vancouver, admitted right away, and tests were conducted during her four-day stay, including a brain encephalogram which showed abnormal results.
But it was when a clown came to visit Callie in her room that Dr. Bruce Bjornson put everything together.
“The clown was making her laugh and Dr. Bjornson noticed Callie’s eyes were rolling into her head and her tongue was hanging out,” said Nancy.
Bjornson figured out that Callie had narcolepsy, which was causing the constant fatigue, and cataplexy, a rare loss of muscle tone disease that affects roughly 70 per cent of people who have narcolepsy.
Callie is one of six kids in Canada, and the youngest, to be diagnosed with narcolepsy.
So how is this treated? No pediatrician in Canada specializes in narcolepsy.
Dr. Bjornson did some research and discovered a doctor who specializes in helping kids with narcolepsy was based at Stanford University in Palo Alto, Calif.
What was Nancy going to do?
She contemplated this during a walk around B.C. Children’s Hospital. In a strong twist of fate, she ran into a friend from Vernon in the hospital parking lot, who was down visiting her own daughter.
Nancy told the friend about Callie, and the friend in turn told Nancy to contact Variety to see if they could help.
An organization called Hope Air paid for Callie and Nancy to fly to Palo Alto, and Variety took care of all of Nancy’s expenses while Callie was being examined.
It’s taken a lot of medication and lots of consultation but Callie, today, is finally on a drug that is helping her deal with her narcolepsy and cataplexy.
She is a fully functioning Grade 5 student at Ellison Elementary and doing great.
“Before I was on this drug, I felt nothing, had no energy and couldn’t run around and play,” said Callie.
Added Nancy: “She’s like any normal 10-year-old. She’s doing well in school and her grades are better.”
And Nancy Wasylik praises Variety, which hosts its annual Show of Hearts Telethon this weekend on Global BC. Nancy and Callie will be tuning in.
“If it wasn’t for Variety, I don’t think Callie would be where she is now,” said Nancy. “I follow the telethon. I did a radio interview last year on Kiss-FM when they did a fundraiser for Variety, and we both took part in a big fundraising event in Kelowna last year.”