KIRKLAND — Howard and Mindy Manka hope to spare other families the months of medical testing and uncertainty over their child's health.
The Kirkland parents of three boys spent more than two years taking their middle son, Parker, 10, to countless doctors before he was diagnosed with narcolepsy and mild cataplexy.
Parker Manka's struggle began in May 2011 when he was treated with antibiotics for strep throat.
"After finishing the course of antibiotics, he started sleeping all day," said Parker's mom, Mindy Manka. "He never fully recovered."
She said some research has indicated that strep throat sometimes "wakes up" the narcolepsy gene.
"At first we thought he was just growing. He would sleep eight to 12 hours a day, wake up, eat and go back to sleep," Mindy Manka said.
When they realized Parker's sleep pattern wasn't changing, they took him to their pediatrician who ordered tests. All the tests show normal results, but they knew something was amiss.
After many more doctor visits with pediatricians and neurologists, and several sleep studies and tests, they received a diagnosis on Aug. 1 from a doctor at Lurie Children's Hospital in Chicago. Part of the difficulty in getting a diagnosis, Mindy Manka said, is that the condition seems to be more rare in children, and very little is known about it.
"That day was bittersweet," said Howard Manka, who struggles to talk about his son's condition. "We finally had a diagnosis, but it was hard because there's no cure for it."
Narcolepsy, he explained, is an autoimmune disease caused by the loss of brain cells that produce hypocretin, the substance that regulates sleep cycles. Cataplexy is a sudden loss of muscle control while awake, usually triggered by strong emotions, such as laughing or crying.
Although there is no cure, Howard Manka said drug treatments are available.
"It's just trial and error to see what works for each person," he said.
Parker knows something is wrong, but doesn't understand it, Mindy Manka said.
"The school district has been very supportive since we got a diagnosis," she said.
Because so little is known about the disease and support is scarce in the Chicago area, Howard Manka, with help from his fellow firefighters at the Kirkland Fire Department, is coordinating a May 10 golf outing to raise awareness and funds for research.
The outing, at Whisper Creek Golf Club in Huntley, will start at 11:30 a.m. with a shotgun start and end with an all-American barbecue buffet dinner at 5 p.m.
The event also will feature Nicole Jeray, LPGA touring professional, who also has narcolepsy. According to her website, nicolejeray.com, she developed severe and classic symptoms of narcolepsy during her third year on the LPGA tour.
"We're going to help get the cause out there using our resources in the fire service," said Kirkland Fire Chief Chad Connell. "We can touch a lot of people, so we're going to help out as best we can through those channels."