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

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. 

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