Balcueva and his son

From Reporter Joan MacFarlane

ROYAL OAK, Michigan (CNN) -- Ernie Balcueva is just 29, but he has seen more than enough death in his family to last him a lifetime.

One by one, Balcueva has watched all four of his brothers die, without warning, from an extremely rare heart disease that appears to run in families. He, too, has inherited the disorder, and now his best chance for survival is a heart transplant.

Last spring, Balcueva's wife, Sue, had a baby boy, who like his father and uncles may face an uncertain future.

The disease, cardiac apoptosis, causes the heart to go suddenly into an irregular rhythm that's irreversible and fatal. It is so rare that only eight cases have been documented worldwide, including the Balcueva brothers.

In the first inkling of what was to come, Ernie's brother Eddie Jr. collapsed and died in a school playground in 1974. Ernie lost his last brother, Rick, about the time his son was born.

"We got to be really close friends," Balcueva says. "We could talk about a lot of things that I wasn't able to talk with anybody about."

Sue Balcueva said she learned about her husband's heart condition when she got involved with him.

"But I also knew his doctors said he could live until he was 70 with a pacemaker. They didn't know what would happen with this disease, and they thought they had it under control," she says. "And Ernie and I fell in love."

Neighbors and friends are raising money to help pay for Balcueva's heart transplant. He is among 4,000 people waiting weeks or months for a donor heart.

As for Sue and Ernie's son, cardiac apoptosis doesn't surface until adolescence. So there will be no way to know whether he has it until then.