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Real Life Movie Extraordinary Measures - Pompe disease

January 6, 2010

For years, a New Jersey family has been fighting a disease that nearly killed two of their children. Their story is so compelling it was made into a book, and now the movie "Extraordinary Measures."

Megan Crowley was just 15-months-old, her brother Patrick just a few days old, when they were diagnosed with Pompe Disease, a rare neuromuscular disorder.

"We had never heard of it, there was no history in the family. To us Pompe was an ancient city in Rome," said father John Crowley.

"That day the doctor gave us Megan's diagnosis and literally had a medical book open on the table and read to us what Pompe disease was, he had never heard of it either," said mother Aileen Crowley.

The fatal disease killed most infected children by 2-years-old.

"You just go through a range of emotions, until finally we settled on determination and that we would enjoy the time we had and we'd make it as joyful and as special as we could, but we'd also do everything we could to try to change the course of that prognosis," Crowley said.

Crowley left his job and raised more than $100 million to launch a biotechnology company to find a cure. In three years, they had a treatment.

When actor Harrison Ford heard the story, he wanted to make it into a movie with CBS Films.

"I thought it was a practical joke at first, some college friends," said John Crowley.

Ford plays the doctor who helps Crowley find a treatment. Brendan Fraser portrays Crowley.

Fraser said having the family visit the set was amazing and Megan was incredible. "She's a spitfire. She's internet savvy to say the least, put it this way, I learned the release date of this film from 13-year-old Megan Crowley," Fraser said.

Megan and Patrick were doing well and their father was still working on better treatments for Pompe and other genetic diseases.

While many have called John Crowley a hero, he says there's nothing heroic about a father taking care of his children.

The movie comes out January 22.

Source: Ch2

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