Chasing Miracles: The Crowley Family’s Journey

The Crowleys refer to themselves as “a very average American family” who simply did “what almost any other parents would have wanted to do” in the face of a situation that was presented by the medical establishment to be hopeless. But this is a family who, when facing impossible challenges, rose to the occasion in a fashion incredible enough to be the subject of two full-length books and a movie, Extraordinary Measures, now in theaters. 

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.

The seeds of the movie Extraordinary Measures, currently in theaters, were planted when Harrison Ford read the Wall Street Journal story about the Crowleys, took it to the producers of Erin Brockovich and said, “We should make a movie about this.”

“After Geeta Anand’s front page story came out, we heard from many different people from so many walks of life, and  Geeta heard from a number of people about writing a book, and she asked if I would participate in that,” John recalls.

“So right around the time that we were getting ready to tell the story to potential publishers, Hollywood started calling,” John says. “It took us about six months or so to get comfortable with that concept, to sign your life rights away, to trust people to make a film and to do it the right way… to take that and actually make it an hour and forty minute major motion picture where you’ve got conflicts of business, science, and family issues … it was a Herculean challenge, and I think they did a terrific job,” says John, who has a cameo role in the movie.

The Crowleys were flown to Portland during production to visit the set, which allowed director Tom Vaughan and the actors to witness the family in action. “[Keri Russell, who plays Aileen in the film,] spent an afternoon just hanging out with the kids, getting to know them. She didn’t have to do that,” Aileen says. “They captured the spirit of the family, they captured the sense of urgency in building a business, they captured the enthusiasm and passion we all had, that entrepreneurial spirit to never, never quit,” says John. “And [they captured] the frustration of drug development. One neat thing about the film is that there’s no bad guy, no bad person, no bad place. There are difficult situations and sometimes I, my character in the movie, acted well and sometimes he didn’t. The only person who is perfect throughout is Aileen and Keri [Russell] of course, but other than that, it’s just a bad situation. Really, the disease is the enemy.”

John, who is currently president and CEO of Amicus Therapeutics, a biopharmaceutical company focused on creating drugs to treat a range of genetic diseases, is optimistic about the future of American health care.

“First and foremost is the importance of constant innovation, risk-taking, and entrepreneurship. You think about what we were able to do with so many people along the way; that was really cutting-edge science. It was failing as much as succeeding. It was companies and private industry coming together; it was patients and parent groups, physicians, hospitals, government researchers, government regulatory agencies, philanthropic organizations. I don’t know if any of that would have happened, or as fast, if all of those pieces didn’t come together. And that is uniquely American. There’s nowhere else in the world you could get all those institutions, all those players, all those characters to come together and that is what makes America still the best healthcare system in the world. It is far from perfect and we can make it a lot better but I think we have to realize that we’re on the cusp of this golden age of medicine. In the next ten, twenty, thirty years we really can diagnose, treat and cure hundreds if not thousands of diseases that people live with every day.

That to me is the most important lesson. Yes, we need to expand access to quality medicine to everybody. We need to control costs and manage costs more transparently, but also give patients and physicians the choice to have a consumer-driven healthcare model, and we don’t have that right now. How do you do all of that and continue to drive innovation and research and development and risk-taking? I’d love to see the entrepreneurial spirit in America unleashed to solve the healthcare problems that we have and make it a better system.”

John’s passion for entrepreneurship and sense of purpose comes from his upbringing. “My grandfather, John, who was first-generation, worked with his hands, spent 25 or 30 years working in a rubber factory in New Jersey, and my grandmother Catherine worked as a seamstress. She was actually quite sick, and they both died in their fifties. From there, we’re pretty much all cops on my other side. My dad, my dad’s older brother, my uncle Jim, my cousin Jim is still a cop in Baltimore, his daughter Laura married a cop in New York . . there are a lot of Irish cops in the family.

“My dad died when I was seven and, just like our kids being diagnosed, that wasn’t the right time, that’s not supposed to happen. But I think your happiness in life is largely dependent on how you deal with adversity.

“For me, experiences growing up certainly shaped me, and I think shaped my perspectives on life – what’s important, what to do and who to believe, the basics of right and wrong. It doesn’t mean you always do what’s right, but at least you have that sense that there’s something bigger than you. I have a sense of service and sacrifice, which was extra special to me too because my dad was a cop and a marine. You get that sense of service and patriotism and sacrifice that was ingrained without him ever saying it. And that’s true, I think, broadly, of people in the Irish community. Look at the names of the heroes who died on September 11th, the firefighters and the cops. There was a pretty outsized number of Irish names there, and that’s not by accident.”

John’s strong work ethic and sense of purpose are what he called upon to put himself through business school and develop his professional career.  He earned a BS in Foreign Service from Georgetown University, a JD from the University of Notre Dame Law School and an MBA from Harvard. He also served in the U.S. Navy Reserve as an intelligence officer, and finished a six-month tour of duty at the Center for Naval Intelligence in Virginia in 2007.
Both John and Aileen credit their Irish heritage with their focus on the importance of family and their indomitable sense of humor.

Aileen’s ancestors emigrated from County Cork, as did John’s, and settled in Scranton, Pennsylvania. “My parents were both born and raised there. I knew my great-grandmother, her name was McCray, and she had 12 children, and from those children we have a family reunion every year. It’s been going on for about fifty years in Scranton, where there’s a very large Irish population,” says Aileen, whose father is Martin Holleran, a prominent businessman who has been featured on Irish America’s Business 100 list. “My father worked for General Electric, and we moved about every two years all up and down the East Coast. We were always the new kids in town but I knew I had my family around. The one thing we’d always look forward to was the family reunions, and weddings, and our cousins’ house – we have a very large extended family that made those moves a little easier.” says Aileen. She thinks that her Irish heritage particularly manifested itself in “having very close family members, people you can lean on. A lot of people don’t have that. More than half the people in the theater last night [for a screening of Extraordinary Measures] were our relatives who came from as far as four hours away just to spend two hours with us in the theater.”

“Laughter, too, that’s one thing you learn in a big Irish family – you laugh a lot at each other, but also at yourself,” says John.

This trait has clearly been passed on to Megan Crowley as well, who has the wry and witty personality that is captured by Meredith Droeger’s acting in the movie. When I meet Megan, she’s reading on her Amazon Kindle and getting ready for her party. She and her father have a clearly well-developed routine of banter, characterized by a story that he tells me. “I had prepped Megan that there was a tough scene [in the movie] that represented when she was a little girl and almost died,” says John. “I was sitting next to her in the theater and got a little teary watching that again, and I watched Megan to make sure she wasn’t upset. I leaned over to her and I said, ‘Megan, you play a much better sick and dying little girl than Meredith does,’ and she just looked at me and kind of dismissively waved me off and said, ‘Dad, don’t start with your little stories throughout the movie!’”

Seeing this family interact, you begin to understand what they mean by “average”: They tease each other, they joke around, they have birthdays and family outings and do homework and play games. Their journey is remarkable, but it is the details of normal day-to-day life that are the ultimate reward: the moments that are taken so much for granted in many lives. “They treat each other like regular brothers and sisters,” says Aileen. “That [opening] scene of John Jr. in the movie stealing Megan’s Barbie doll and running around with it was a true story. Though actually, really, he took the Barbie doll’s clothes off and Megan made him re-dress all the Barbie dolls and told him what outfits to put on, when he was eight or nine years old. They teased him mercilessly all night. He and his sister fight all the time, and  last night, I was yelling at him for the fifth time to go to bed and I saw him run upstairs to his brother’s room, give him a kiss and run out. They both take care of Patrick together. I think that’s normal for a lot of kids.”

While the Crowleys’ journey is incredible and unique, the lessons that they have learned from it are universal. “Extraordinary Measures isn’t just a movie for parents of special needs kids,” says John. “It’s really about family, faith, science, hope, inspiration. These are basic themes in life in the sense that one person, one family, one group acting together can sometimes succeed and change the course of how things were supposed to be.”

Chasing Miracles: The Crowley Family Journey of Strength, Hope and Joy, by John Crowley (with Ken Kurson), with a foreword by Aileen Crowley, is in stores now.