“We were on top of the world,” Crowley writes in the University of Notre Dame Law School magazine. “It was 1997. I had a great job with a consulting firm in San Francisco. Most importantly, we had two beautiful children. John was two, and Megan was one. By March of the following year, we were expecting our third child. Three kids aged three and under—the perfect Irish Catholic family was in the making!”
But in the months before their third child Patrick was born, he and his wife began to notice that Megan wasn’t as strong as a one-year-old child should be. “She wasn’t pulling up in her crib, and she wasn’t taking her first steps.”
A few days after Patrick was born in March 1998, they learned that 15-month-old Megan had a rare muscle-wasting condition, Pompe disease. While learning that their older son, John, was healthy, they also found it that it was possible that Patrick also had it. Their newborn’s diagnosis was confirmed a few months later.
The doctors told John and Aileen that the best they could hope for was that Patrick and Megan could survive for a few years breathing through ventilators with round-the-clock care. They might not live to two, and making it to 10 would be a miracle.
Despite their medical bills, the determined and entrepreneurial father decided to quit his job and start a biotech firm, which would focus on finding a treatment and even a cure for this disease.
Cowley’s struggle is dramatized in the new film opening today, Extraordinary Measures. It stars Brendan Fraser as Crowley and Harrison Ford as the pioneering but cantankerous researcher who helps Cowley search for a cure.
That struggle is now dramatized in Extraordinary Measures, starring Harrison Ford as a pioneering, if anti-social, researcher, and Brendan Fraser as Crowley.
The family now lives in New Jersey, having moved there to be closer to doctors with more expertise in the disease. Crowley is president and CEO of Amicus Therapeutics, Inc. He tells reporters that he never expected that his family’s story would be turned into a movie. Keri Russell plays Aileen. “Not once, during all our visits to the hospital or meetings with financiers, scientists and drug companies, did we imagine that a movie would be made about our lives.”