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The Crowley Family: Megan, Aileen, John, John Jr., and Patrick. Photo by: Brian Doben

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

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The Crowley Family: Megan, Aileen, John, John Jr., and Patrick. Photo by: Brian Doben

I arrive at the Crowley home in the late afternoon on December 18th, hours before eighteen girls are expected to arrive for Megan Crowley’s thirteenth birthday party sleepover.The Crowleys’ Princeton, New Jersey home is beautiful, in the sort of way that houses in catalogues or movie sets are, and huge. But not at all unwelcoming; on the contrary, you can tell that it’s a loved house, the sort that is made for holidays with large extended families and after-school activities for three children and their friends.

A sixteen-foot Christmas tree twinkles in the foyer. Two adorable Jack Russell terriers adopted from Ireland scamper in the library. Balloons are being blown up in the kitchen. Twilight-themed party favor bags are lined in neat rows on the table. For most families, this scene alone would be a stellar achievement, reached with probably not a little yelling and a lot more stress. For the Crowleys, John and Aileen and their children, John Jr., Megan and Patrick, it’s part of a much bigger picture. 

In 1998, when Megan Crowley was fifteen months old, she was diagnosed with a rare form of muscular dystrophy called Pompe disease. Her brother Patrick, who was seven days old at the time, was diagnosed four months later.

Pompe disease is a genetic disorder caused by a deficiency in the enzyme that breaks down glycogen. Sugar stored as glycogen builds up throughout the body’s muscles, depriving the cells of energy and leading to muscle atrophy. While Pompe doesn’t hinder mental function, it affects the skeletal muscles, diaphragm, nervous system, liver, and the heart. Most children die from respiratory failure or cardiac arrest as the heart slowly enlarges. Megan and Patrick were both expected to die within the first few years of their lives.

John and Aileen were encouraged by doctors who made the diagnosis to enjoy the time that they had with Megan and Patrick. “We looked at them at first thinking they know everything because they’re doctors, but they don’t,” says Aileen. “You’ve got to be your kids’ own best advocate,” explains John.

By fall of 1998, Megan was in the hospital in severe respiratory distress. She pulled through, against the odds, and John and Aileen became even more determined to fight back against the disease. They began by starting a foundation to raise money for research on Pompe, enlisting friends, family and John’s business school contacts in their efforts.

John, who had been working as a management consultant in San Francisco, moved the family to Princeton, New Jersey, and took a job at Bristol-Myers Squibb, one of the world’s largest pharmaceutical companies, so that he could become involved on a daily basis in health care research.

His medical and scientific experience was limited before his children’s diagnosis, and John had to work quickly to fill in the gaps in his knowledge to become involved in the biotechnology business. “I got a D in chemistry at the Naval Academy and that was my last science class ever,” he recalls. “I hated science. It’s one of the reasons I decided to go to law school. Most CEOs in our industry aren’t scientists. But you need to understand the science, the medicine, and the technologies in a start-up biotech company. You need to be able to go toe-to-toe with a PhD and understand and articulate your technology and your disease as well as any scientist can. You don’t need to know the broad universe of science, but you need to speak very fluently, otherwise you cannot have critical input. So I had to learn. I immersed myself in the labs and the meetings and hired tutors at night to make me smarter – I learned a lot.”

In March 2000, with his kids running out of time, John left his secure job at Bristol-Myers Squibb to help co-found and become CEO of Novazyme, a start-up biotech company focused on finding a treatment for Pompe disease. It was a four-person company in Oklahoma City with “no revenue, no product, and an untested idea that would require years to prove. It was as start-up as start-ups get,” he remembers. 

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.

“Now Megan’s grown and she’s stabilized and Patrick as well, but they’re still very special kids. Megan still has more strength than Patrick has, and she has a much more expressive personality too. They’re incredibly smart kids. Megan’s a straight-A student. Patrick’s in sixth grade, Meghan’s in seventh and John’s in eighth . . . in terms of the future, their [body] parts will continue to be healthy and this drug will keep their systems stable. We look to new technologies, to new enzymes, to new small molecule approaches, to combinations of therapies, that in the next many years will extend and enhance their lives,” said John.

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