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Stories From Main Street: Using A Family Tragedy To Help Diagnose Congenital Heart Defects

WALDWICK, N.J. (CBSNewYork) - A Bergen County family is on a mission to save lives in memory of their son who died from an undiagnosed heart condition.

As WCBS 880's Sean Adams reported, there is no holding back the tears when James Fisher talks about his son.

"He was 13 when he passed. It was his birthday. Big kid, good athlete," Fisher said. "Took him to practice on his birthday, routine warmup and then he collapses and from there, it's a battle every day."

Stories From Main Street: Using A Family Tragedy To Help Diagnose Congenital Heart Defects

Sean Fisher died August 25, 2008 at football practice.

"No warning signs whatsoever with Sean. If you would've taken one look at him, you never - that was the last thing you thought ever would've happened to him," said Fisher.

Sean Fisher collapsed and died from an undiagnosed heart condition known as hypertrophic cardiomyopathy, a thickening of the heart wall.

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James Fisher and his wife Sheila now dedicate themselves to providing free screenings to high school freshmen in Waldwick and Paramus, N.J. through the Sean Fisher Memorial Foundation.

"The first and only sign of this anomaly is death and it's a kick in the teeth. I think if we were shown this test, he probably would have been alive today," Fisher said. "Just recently, there was a kid in Pascack Valley, he collapsed. Luckily enough, there was a defibrillator around, he's one of the lucky ones. He survived."

Through the foundation over the past four years, 531 teens have been screened. Of those, 14 kids and one parent were diagnosed with serious heart defects, Adams reported.

"Two of the students, their whole families had to get checked. They found out they had HCM, which is mainly genetic," Fisher said. "Young girl last year, they caught her on the table. She's now wearing a heart monitor."

Dr. Robert Tozzi, chief of pediatric cardiology at Hackensack University Medical Center, reviews the test results.

"Almost 1 in 100 children have a congenital defect in their heart," said Dr. Tozzi. "These things are treatable and in some cases, curable. In the ideal world, I'd screen everybody, every year, older kids. I would do it as part of an education program."

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Stories from Main Street (credit: CBSNewYork)

As to whether all children should be screened, the doctor said it's a complicated question.

"The current recommendation by the American Heart Association and the Academy of Pediatrics is no. But when I have children who've died that I've had to talk to the family and they've had something that could've been picked up, how could you say not to screen?" said Tozzi.

Fisher said the Sean Fisher Memorial Foundation is about keeping Sean's memory alive while also working to potentially save other Bergen County children.

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