Arlington kicks Batten disease in memory of Carl Bergam

Carl Bergam - Courtesy Photo
Carl Bergam
— image credit: Courtesy Photo

ARLINGTON — Carl Bergam loved soccer.

“That was his favorite thing to do with everybody running around and screaming; he loved it,” said his mother, Robin Bergam.

Even when Carl’s eyesight got so bad that his parents, Robin and Jeff, were advised not to let him play, he still wanted to be on the pitch.

With that spirit in mind, the Bergams have chosen to keep the memory of their son alive with a soccer clinic and a silent auction to support the fight against Batten disease.

An extremely outgoing and adventurous character, Carl was diagnosed with the fatal and incurable disease in 2008, at age 11, after an extensive period in which doctors couldn’t tell him or his parents why he was losing his eye sight at six years of age.

Blindness is one of the onsets of Batten, a children’s disease that is so rare that there is not a single case of it in Washington state. Two to four of every 100,000 births in the United States are afflicted by Batten, according to the Batten Disease Support & Research Association, which is part of the trouble. It’s so rare that it can be overlooked and be misdiagnosed early on.

Carl lost his battle with Batten in February of 2009, and a few months later, the Bergam’s were approached by Carl’s former physical education teacher, Lisa Boyle, about a way to remember their son.

“I was thinking of a way to honor him and help raise money to fight this terrible disease,” Boyle said. “The first year, I was thinking that we would get like $800, but I was stunned when we donated $3,200.”

The soccer clinic, which is organized by Boyle, now has help from the Arlington High School players such as Nick Welch who are helping to provide instructors.

The other part of the day is the silent auction, which is growing as well too, as it had nearly 60 items to bid on in 2009, including hall rentals, decorative hangin floral baskets, handcrafted jewelry, kid-friendly items and a 40-watt, handheld PA system among other items.

“When I saw people we didn’t even know bidding on things — that really hit me,” said Robin Bergam, who also has given presentations of Batten for a Combined Federal Campaign, which is a philanthropy program that let’s employees solicit contributions from employees of the federal government.

The Kick Batten’s For Carl Soccer Clinic begins at 9 a.m., June 12, and the auction is at 1 p.m. at the Arlington Boys and Girls Club fields.

Volunteers for the event include the Bergam family (mother Robin; father, Jeff and sister, Mackenzie), Bethany Belisle, Kim Deisher-Allen, Kathleen Parra, Boyle, Christina Waltman, Denise Putnam, Laura Monjazeb, Ashley Moe, Angie Kyle, Dana Wendland, Welch and Jodi Smith.

Those contributing to the event will help a disease to which there is hardly any treatment and that only gets $3 million from the U.S. government annually.

They will also be there to celebrate the life of an extraordinary child that despite his condition seemed to lift the spirits of those around him.

“He was a character,” said Jeff Bergam. “He always had a joke to say and even when it started to get bad, he never let it beat him down.”

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