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.”