Colorado family fights for access to lifesaving drug for infant with Barth syndrome

A Colorado family is in a race against time to secure access to an experimental drug that's keeping their infant son alive.

Gilbert Dryden CBS

Gilbert Dryden was born with Barth syndrome -- an ultra-rare genetic condition that affects only one in 300,000 births, almost exclusively boys.

The disease compromises the mitochondria -- the energy-producing structures in nearly every cell -- and can lead to heart failure, even in infancy.

For Gilbert's mom Madison Dryden, the condition is one she feared. Her brother, Ben, died from heart failure as a baby -- a tragedy that left the family without answers for decades.

"His heart basically turned ... it was turning into scar tissue, kind of like turning into stone," Madison's mother, Jeanne Eiss said, "There was nothing we could do."

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