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Late last year, Scott Baio went from former child actor and reality TV star to frightened father in a short period of time.

Daughter Bailey DeLuca was born to Baio and Renee Sloan in November, but joy quickly turned to fear when she was diagnosed with GA-1, a metabolic disorder that can cause seizures and leads to coma and even death. The couple is finally opening up about the experience.

“Every breath that you take, every thought that you have, every moment that you’re conscious, it’s all you’re thinking about,” Baio told Celebrity Baby Blog. “The disease is a constant in your brain. It never leaves you.”

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Scott Baio, Renee Sloan and a healthy Bailey DeLuca pose for the camera.

Sloan added that Baio would “break down” at the sight of a baby – any baby and the pair got married in December without even revealing their ongoing pain.

Fortunately, after weeks of further testing, doctors determined the result had been a false positive; seven-month old Bailey is fully healthy.

“In a way I’m glad I went through it. Because this sort of thing puts everything else in perspective,” Baio said, adding of the foundation they are establishing: “We know we need to be a voice here, and that’s what we’re trying to do.