Whatever happened to . . . The parents and the legacy of Sean

By Kelley Benham, Times Staff Writer
Published September 2, 2007

"Sean's echo"; June 1, 2004; See past coverage at life.tampabay.com.

THE STORY: Sean Anderson was 10 when he closed the garage door, headed down the sidewalk on Rollerblades, and died.

Doctors had no answer. The death certificate said, "cause unknown."

Sean's parents, in a cloud of questions, did one thing that made sense. They donated a device that Sean had worn to help with his stuttering to another boy.

FROM THE STORY: Sean's parents were numb with questions. Why their son? Why a boy who was loved so much?

When he squinted, they got him glasses. When he struggled with writing, they got him extra help. When he started stuttering, they spent months and thousands of dollars getting him a device that helped him speak.

It was working. He was funny and likable and popular and sweet. And then gone.

THE REST OF THE STORY: It took more than four months, but eventually a medical examiner gave a name to what killed Sean: cardiac arrest caused by "idiopathic fibrosis of the cardiac conduction system." "Idiopathic" is a science-y word for "unknown."

Sean's mother, Martha Anderson, started a nonprofit organization, Saving Young Hearts. The group raises awareness about sudden cardiac arrest in young people, promotes heart screenings and helps place Automated External Defibrillators in schools and other places where kids gather. Martha speaks to PTAs and other groups about the need for more thorough school physicals, especially for athletes.

"Putting a stethoscope to your chest isn't enough," she said. "There has to be an EKG." Doctors don't always agree that the pricey tests are needed. But she says parents should ask for them anyway, as a baseline screening.

The group held its first large screening last month in Central Florida and performed $10 EKGs on 264 kids. They are awaiting the results.

WHAT HAPPENED NEXT: Martha keeps reading about developments in heart research, looking for answers.

The Andersons also continue to work with Janus, the company that made Sean's SpeechEasy stuttering device, to donate one device per year to a needy child. So far they have donated five, including the one Sean wore.

ON THE WEB: www.savingyounghearts.org, www.speecheasy.com