Golf benefit is scheduled to spotlight rare disorder

Kyle Diemert was only 16 months old when his parents learned that his unsettling "weird little stare" was in fact a small seizure.

The Marysville couple took their son to Children’s Hospital &Regional Medical Center in Seattle for a round of tests that would ultimately lead to a diagnosis.

Their son has a genetic disease called tuberous sclerosis complex, so rare most people have never heard of it.

So when more than 70 friends and business acquaintances tee off Thursday morning for a tournament at Gleneagle Golf Course in Arlington, their mission will be as much to raise awareness of disease as to reach their goal of a $5,000 donation to the Tuberous Sclerosis Alliance for education and research. The group is based in Silver Spring, Md.

"We decided there wasn’t anything for tuberous sclerosis in the Northwest right now," said Jay Richardson, tournament organizer and a business partner of Kyle’s mother, Tracie Diemert, at John L. Scott Real Estate’s Everett office.

Fund-raising and awareness efforts won’t end when the event closes with Thursday’s post-tournament luncheon, he said. He and other friends are planning a bigger event next year, which he hopes can include an auction.

The need to keep battling the disease was doubly underscored when the Diemert family recently learned that Kyle’s father, Duane Diemert, who is 38, may also have the disease, although in a milder form.

"I am being tested," he said, adding that numerous cysts have been found on his kidneys.

"Some people can live their whole life and not know that they have this disorder," he said.

Meanwhile, Kyle’s parents worry about the future for their son, who is now 5.

Kyle has some autistic tendencies, developmental disabilities and noncancerous tumors on his brain and kidneys, his mother said.

Her son’s development is about three years behind other children his age. "He’s just now starting to talk in sentences," she said.

Although his seizures are now well controlled, "that could change at any time," she said.

"It’s the fear of the unknown," Tracie Diemert said. "What’s next? How will it change for him?"

Reporter Sharon Salyer:

425-339-3486 or

salyer@heraldnet.com.