January 27, 2010

A conversation with John Crowley, the heroic father depicted in ‘Extraordinary Measures’

By John Gleason

Frank By John Gleason

When John Crowley got married, he never dreamed that his life, and that of his family, would take the journey it has. That voyage has taken them down a road of despair, shock, hope and inspiration.  It’s a story that was the subject of a book and now a major motion picture called “Extraordinary Measures” (CBS Films) starring Brendan Fraser and Harrison Ford.  The tag line from the movie reads, “Don’t hope for a miracle—make one!”  For Crowley, it became his mantra.
A biotechnology executive and entrepreneur, John and wife Aileen were stunned to learn in 1998 that their children, Megan and Patrick, had been diagnosed with Pompe disease (glycogen storage disease type II), a neuromuscular disorder in which the body is incapable of breaking down glycogen, a stored form of sugar the body uses for energy.  Buildup of this material causes muscle weakness and affects other body tissues including the heart, liver and nervous system.  The disorder affects one in 40,000 to 300,000 people.
The movie, which has opened to rave reviews, deals with Crowley’s heroic crusade to find a therapy to help his children.  Crowley was in town Jan. 13 and talked with the Denver Catholic Register about his family’s journey and the faith that sustained them throughout.

Q: Did you think when you were young that the journey you’ve been on was in store for you?
A: No.  When you’re young you think that everything is going to go as planned, but it never does. But the challenges you do get seem to be directly proportional as to how you handle those challenges.

Q: When you first heard this diagnosis—what went through your mind?
A: It started with shock; we never expected it.  Megan was 15 months, Patrick was an infant.  We went through grief and denial.  Then I sat down at the computer and learned all I could about this disease and eventually found out there were researchers who were working on potential therapy.  That discovery translated to hope, which then turned to determination.

Q: Has faith played a part in this journey?
A: A tremendous part. Yes, there were many times when we questioned that faith. And times you keep praying and hoping and even wondering if there is a loving God.  But then you realize that you’ve been put into a circumstance for a reason and at that point you pray even harder for strength and inspiration.

Q: Your children began their therapy in 2003.  How quickly did you see a response?
A: Literally that night.  Aileen was at the hospital, I was talking to her on the phone and in the background I could here Megan and Patrick laughing and talking, refusing to go to sleep.  The material in their bodies was finally breaking down and the kids were on a sugar high.  The solid evidence came a few weeks later when tests revealed that their hearts were significantly improving.  Today they go in for a 12-hour treatment every other week and the outlook is very good.  In fact Megan is already planning her wedding.

Q: Your story was profiled in the Wall Street Journal, which grew into a book that actor-producer Harrison Ford eventually turned into the film, “Extraordinary Measures.”  What went through your mind?
A: At first we were skeptical and apprehensive. It took the better part of six months for us to get to know the producers and understand their way of thinking.  It wasn’t an overnight thing but everyone has been terrific and we’re extremely pleased with the result.

Q: What are people going to take away from this film?
A: I think everybody will be touched by it.  You don’t have to be the parent of a special needs child to understand the messages of hope and inspiration.  We worked hard to present an uplifting movie and that’s what we got.  If people walk away with anything I want them to be inspired as we’ve been inspired by the kids.

“Extraordinary Measures,” staring Brendan Fraser and Harrison Ford is rated A-III— adults by the USCCB Office for Film & Broadcasting. The Motion Picture Association of America rating is PG—parental guidance suggested. Some material may not be suitable for children.