Issaquah High School golfers on par to raise awareness of rare disease

May 22, 2012

By Staff

Calvin sits with his mom Trisha Bertsch after the Cheryl’s Garden Angels finished their gift basket project. By Krista Mui

It was last fall when Issaquah High School student Weston Mui first met his neighbor Calvin Bertsch, a 4-year-old who has mitochondrial disease.

The illness results from mitochondria failure and delays development growth, and can cause strokes, seizures, heart and kidney problems, and immune- system failures among children.

Inspired to raise support and awareness for the disease, Mui and his longtime friend Bryan Jung, also an IHS student, collaborated to organize a golf tournament to benefit the Northwest Mitochondrial Research Guild. It was a natural for the two teens, who play on the high school’s varsity golf team.

The tournament is at 1 p.m. June 2 at the Willows Run Par 3 Course in Redmond. A full 100 percent of the proceeds will be donated to the guild.

“Bryan and I wanted to combine our passion of golf with our desire to help Calvin and other children with this disease,” Mui said. “We hope to help raise awareness about it to raise funds for mitochondrial research.”

The tournament is open to the public and a minimum of $50 is required per player.

Prizes for the tournament include golf packages such as a threesome at The Members Club at Aldarra with the director of golf, lessons with golf professionals at Aldarra and a foursome at TPC Snoqualmie Ridge.

“I think it’s great that Weston and Bryan want to take on this event, especially because they are still in high school,” said Jody Mull, former president of the Issaquah Schools Foundation. “It’s admirable that they are organizing this event to help their neighbors.”

According to the Mitochondrial Research Guild website, the number of people with mitochondrial disease is increasing every year as the medical community learns more about the illness.

How to help

Register for the golf tournament or donate to the Mitochondrial Research Guild at www.nwmito-research.org.

“It’s an invisible disease,” said Ashley Farrington, vice president of the Mitochondrial Research Guild. “Not many people have heard about it, but it’s an underlying issue for a variety of problems among children.”

“Children with mitochondrial disease get pretty sick,” Mui added. “They can have strokes, seizures, gastrointestinal problems, blindness, deafness, muscle failure, diabetes, developmental delays … The list go on and on, unfortunately, and many do not have a long lifespan.”

There is no known cure for the condition.

In July 2010, Calvin was diagnosed with the disease. He had difficulty nursing and vomited after nearly every meal as an infant, according to his parents, Tricia and Brian Bertsch. By his first birthday, he was often too tired to eat or drink. He had several surgeries and each took longer to recover from. He had eye surgery to loosen the muscles in his eyes and tonsil surgery because of a seasonal illness.

Since his diagnosis, “Calvin has grown and developed and continues to regain the milestones that he had lost his first two years,” according to a statement by his parents on the Mitochondrial Research Guild website.

”I hope that monetary donations can help Calvin and other mito sufferers lead lives filled with happiness and satisfaction,” Jung said. “I want to do what I can to help support Calvin as well as his family.”

“We have a whole team of specialists at (Seattle) Children’s that are working on research for the disease,” Farrington said. “With more funds, we can help to fill positions and provide equipment for research.”

Tammy Chang a student in the University of Washington Department of Communication News Laboratory. Comment at www.issaquahpress.com.
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