Harrison Ford's Extraordinary Measures
In his latest movie, the actor and producer brings to life the story of a father's quest to cure his children of Pompe disease.
Developing Enzyme Therapy
"I knew nothing about any of this when I first started," Crowley says. "Once the seed money was in place and the science [to develop an effective enzyme therapy] was down, my initial foray into the biotech industry was two steps forward, one step back. But I think my 'never quit' attitude made up for my lack of experience."
Clearly. As the film movingly depicts, developing a therapy from the innovative thinking of scientists -- represented by Ford's character -- was merely step one. Just as progress was being made -- in real and reel life -- Crowley ran out of money. He was forced to sell his fledgling company to a bigger biotech firm, Genzyme, whose leaders welcomed his continued management of his research team.
Then came another blow. When Genzyme eventually developed a treatment for Pompe, his kids "were rejected to be part of the original drug trials because of conflict of interest," Ford says.
"That was more than frustrating," Crowley was quoted as saying in 2007. "Even though the FDA was comfortable with Megan and Patrick being part of the trial, the hospital's Internal Review Board rejected their application" because he was an executive of the company. "So I made it easy for them," he says. "I promptly quit my job." (Spoiler alert: In the film -- most likely for added dramatic tension -- he's fired.)
This third-act setback does lead to a happy ending, however. Free from Genzyme's constraints, Crowley's children received their first enzyme infusions in January 2003. While the stages of their illness were too far advanced to bring about complete recovery -- recent studies show infants receiving the therapy lead nearly normal lives -- both Crowley kids immediately improved. Megan's enlarged heart returned to its normal size within six months of getting that first dose. Patrick, too, gained strength.
Harrison Ford: Airplane Pilot
Seven years on, they are relatively healthy and, most important, alive. And they consider their father -- whose memoir about the experience, Chasing Miracles: The Crowley Family Journey of Strength, Hope, and Joy, is due out in January -- a true action hero.