Running gave him purpose after learning of inherited heart condition

At 11, Tom Sutch was playing street hockey when he saw his dad heading out for a work trip.

Tom waved goodbye as Kevin Sutch – an EMT in New York City and commissioner of their local volunteer fire department on Long Island – drove off to a fire safety conference a few hours away.

Two days later, Tom and his sister, Karen, came home from school to find the driveway filled with cars.

Their mother pulled them aside to tell them the news. Kevin had died in his sleep while out of town. He was 39.

It didn't make sense, Tom thought. His father saved people's lives. How could he lose his own while he was sleeping?

A few weeks later, an autopsy report said the cause of death was sudden cardiac arrest possibly related to a calcified aortic valve.

Were Kevin's heart problems genetic? Might he have passed something on to Tom and his siblings – Karen and brother, Brian? They went to a cardiologist to find out.

No problems were detected.

Nearly a decade later, one of Kevin's brothers began having fainting spells. He went to see a doctor about it. He mentioned that his (and Kevin's) mother had a history of seizures.

This led to genetic testing, something fairly new at the time and far more advanced than the screening Tom and his siblings had gone through.

Kevin's brother – thus, Tom's uncle – was found to have a marker for long QT syndrome, a condition that affects the heart's electrical system.

Each heartbeat is mapped as five separate electrical waves. The electrical activity that occurs between the Q and T waves is called the QT interval. It shows electrical activity in the heart's lower chambers. A long QT interval can cause sudden, uncontrollable fast heart rhythms. The condition is rare, and not everyone who has it has dangerous heart rhythms. But when they do occur, they...