The Fight Against Barth Syndrome

We want to talk about a medical condition most people have probably never heard of? It's called Barth Syndrome.

The rare genetic disorder impacted a Tallahassee family when their oldest son died from the ailment. Shelley Bowen is the mother of three, although the middle child is no longer living, she hopes his memory will live on in the boys she saves diagnosed with Barth Syndrome, a rare genetic disorder affecting males.

Sixteen-year-old Michael Bowen and his dog “Pickles” are inseparable; in a way she is his guardian angel.

Michael was in congestive heart failure, but it wasn't the first time. In 1988, at the age of one, Michael and his older brother Evan were hospitalized with dangerously enlarged hearts.

"We had our first information about Barth's Syndrome, which sure enough the boys did have it was delivered on the day of my sons Evan's death," says Shelley Bowen, Michael’s mother.

It was a diagnosis Shelley spent more than two years looking for, one that left her mourning for her baby boy, Evan, and fighting to save Michael. That's how the Barth Syndrome Foundation was born.

"To ensure that Evan has a legacy that he has never able to make, and it will not go through this again and loose another son," Shelley says.

As for Michael, the foundation put him in touch with other Barth boys.

Barth Syndrome is the most dangerous in the first five years of life, and unfortunately it takes five to seven years to diagnose the rare disease, which in most cases is too late, as was the case for Evan.

The cause of death in most cases is heart failure.

Click here for more web information on Barth Syndrome.