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.