"Extraordinary" Parents' Life-Saving Quest

It's a tough question for any parent to ponder. If you were told that your children had a rare genetic disease and only had months to live, what would you do?

The true story of a New Jersey man faced with that diagnosis is the inspiration for the new movie "Extraordinary" Measures" produced by CBS Films.

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CBS News correspondent Kelly Wallace sat down with the family to hear their touching story.

The Crowleys of Princeton, N.J., say they are just a regular family. But John Crowley, who is a businessman, not a scientist, helped develop the medicine that actually saved his children's lives. His is a story of a race against time that he was determined to win.

Megan Crowley was just 15 months old, her brother, Patrick, just a week old when their parents were told they had a rare and fatal disease.

"When you hear that, I guess the worst news -- I'm sure it's the worst news a parent can hear," John Crowley said.

Doctors told John and Aileen Crowley they'd be lucky if their children lived to see their second birthday.

Their children suffer from Pompe disease, a rare form of muscular dystrophy that affects only a few thousand worldwide.

"It affects skeletal muscles, so their strength, the diaphragm for breathing, and cardiac function, so the heart of course is a muscle," John said.

Three times in one week, Megan almost died. But John says he saw the determination in his daughter's eyes.

"That was the toughness, the determination, the feistiness that they didn't want to quick. So we knew from that moment," he said.

"It's as raw today as it was 10, 11 years ago?" Wallace asked.

"Yeah," John said with tears in his eyes.

Told there was no treatment and frustrated it at the slow pace of research, John quit his job at a drug company to start a small biotech firm with the goal of finding medicine to save his kids' lives.

"What is your reaction when John tells you I'm going to quit my job and I'm going to start a small biotech company?" Wallace asked his wife, Aileen.

"John and I had talked about it and I trusted John and knew that he would do the right thing," she said.

Meanwhile, their children continued to defy the odds as John managed to raise more than $100 million for research.

"It was literally building lists of who do you call and what do you do. And it was so great to see that, just the community come around it," John said.

Science takes time.

As depicted in the film, John's startup company played a role in developing a life-saving treatment. Megan and Patrick got their first dose in 2003, 12 weeks later, John told Megan the news he dreamed about.

"I said it means you're going live to be an old lady," he explained. "And she kind of looked at me and smiled and gave me a little thumb's up and just said thank you."

That was more than ten years ago. Megan is now 13. Patrick's almost 12. And while the treatment stopped the progression of the disease, both children remain wheelchair bound. Their older brother, John, who does not have the disease, is 15. All of them got a kick out of attending various screenings for the film and in meeting the stars who played them.

"This was the first moment that Megan met Meredith, the young girl who plays her. And it was just kind of like two friends meeting," John said.

John's now working on the next generation of treatments for Pompe disease and the quest for a cure, which he believes will one day be found.

"The movie is called 'Extraordinary Measures.' Do you consider yourself and what you have done extraordinary?" Wallace asked.

"No, I think just ordinary. Ordinary with an awful lot of help from a lot of people," he said.

Many other people, especially families with children with Pompe disease, would disagree.

"The Crowley's are clearly humble and say they continue to be amazed at how tough their children are," Wallace said.

To read an exerpt of "Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy" by John F. Crowley, Ken Kurson, and Aileen Crowley, click here.