Oviedo family fighting to save 5-year-old son's life

OVIEDO, Fla. – An Oviedo family is raising awareness of an experimental drug that could help save the life of  their son, who is battling a rare and fatal disease.

Brendan Labbadia is a typical 5-year-old boy. He loves to run, play with his family at the park and eat Popsicles. But in a few years, his mother says he won't be able to run, go down a slide, or even get dressed on his own.

"They tell us that boys will be in a wheelchair between 9 and 12 and life expectancy is usually early 20s," his mother, Colleen Labbadia, said.

Labbadia says her son was diagnosed with Duchenne muscular dystrophy when he was 1. It is a rare, muscle-wasting disease that is fatal. Up to 15,000 boys in the U.S. have Duchenne and there is no cure.

"Instantly we went into fighter mode and we knew that there wasn't anything we wouldn't do for him to help save him ultimately," Labbadia said.

Labbadia hopes the experimental drug "Eteplirsen" can help. She says clinical trials prove it slows down Duchenne's progression. But last month an Food and Drugh Administration advisory committee voted against approving it, questioning the size of the trial and the drug's effectiveness.

Labbadia was at that meeting in Washington.

"It was crippling to hear those words. You just felt the whole room deflate. It was really sad," she said.

But she still holds out hope.

"Time is not on our side. The approval of this medicine is huge," Labbadia said.

The mother says it is hard leaving the fate of her son in the FDA's hands, especially when she knows this medicine could help him and thousands of other boys across the country.

"Maybe it won't let them live until their 80 or 90, but even if it gives them a fuller quality of life and a longer one at that, that's what we would like to do," she said.

The FDA is expected to make its final ruling on the experimental drug on May 26. It could chose to go along with or reject the panel's recommendation. If it denies the drug's approval, the maker of Eteplirsen could start over with another trial, but that could take years.