Chasing Miracles, The Crowley Family Story - Part One: The Disease

While John spent long hours traveling to meet with scientists and researchers who had promising theories on developing an enzyme to treat Pompe, Aileen ran the household working with the children. “We both agreed we would suck at each other’s jobs,” says John. “It was a very different experience,” adds Aileen. “They are both difficult jobs, but I think we did okay.”
They’ve had a long time to learn one another’s strengths, talents and foibles: John and Aileen were high school sweethearts and have been married since 1990. “And we’ve been together ever since. Kicking and screaming some days, but we’ve been together a long time – twenty years this summer,” says Aileen.

“More than anything, we didn’t want to look back years later and wish we’d done this, or gone to this place, or talked to that person, or worked that much harder,” says John. “Whatever the outcome, we just wanted to be at peace with everything that we humanly could have done. And sometimes you do want to quit. You think, there are smarter people than you to do it, and you think, how much time am I spending away from home, how much money it costs and all that, and then you go home after a week of traveling and see the kids and realize it’s what they want.”

The stressful schedule took its toll on their marriage, but John and Aileen developed strategies to keep challenges in perspective and maintain the joy and sense of humor that has always carried them through. “That’s not unique to us, to have to find that balance between work and family,” says John. “And one of our lessons – in fact, I think Geeta [Anand] captured it at the very end of her afterword in the book [The Cure based on her Wall Street Journal articles on the family] – is that what we’re really all striving for is time. Time with the ones you love and the memories that you make. Ultimately success does not come without hard work and many hours in any endeavor. You’ve got to find that balance.”

In 2001, John’s risky decision to leave his position at BMS and take on the  challenge of finding a treatment for his children’s disease paid off. Novazyme merged into Genzyme Corporation, the third largest biotech company in the world, in a nine-figure deal. The tiny start-up had been built into a 120-person business that would, as part of that larger company, create the treatment that John credits with saving his children’s lives.

In 2003, Megan and Patrick were able to begin a three-year clinical trial of a drug for Pompe, discovered and produced by Genzyme through the efforts of John and hundreds of other people. Since May, 2006, they have been treated with the commercially approved drug, Myozyme, which has reversed the enlargements of their hearts and improved their muscle strength.

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Nster.com