Eagle Creek community raises money to fight Batten’s Disease

ARLINGTON — Nearly 30 kids turned out to participate in a soccer clinic memorializing a fellow Eagle Creek Elementary student who passed away in February.

A soccer enthusiast before Batten’s disease took his life, Carl Bergam’s fight with the neurological disorder also known as juvenile neuronal ceroid lipofuscinosis inspired the teachers and students that knew him at Eagle Creek to raise money for a treatment of the condition.

Onset of the disorder begins in childhood with worsening vision and gradual loss of motor skills.

Despite struggling with these symptoms, Bergam’s former physical education teacher Lisa Boyle said he never let the disease get the best of him.

“He was just a phenomenal young man, who through devastating health information, kept his sense of humor to the final moments. He loved knock-knock jokes and country music. Bless his heart, he would sing at the top of his lungs, off-key,” Boyle said. “Just a wonderful young boy who never let the disease get the better of him until it took his life.”

Boyle and fellow PE teacher Ashleigh Moe led the soccer clinic for kids ages 5-11. Including proceeds from a silent auction held indoors at the same time — including the donation of gifts and time from the teachers and parents who knew Bergam — the event raised $2,200, which will be donated to the Batten’s Disease Support and Research Association. The disease currently has no treatment or cure.

“I was shocked. I would have been ecstatic with $800. It was amazing,” Boyle added. “Those of us that ran the thing, including his family, were happily, joyfully overwhelmed. We look forward to doing it again next year.”

Bergam was 12 when he passed away.

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