Chasing Miracles

by

Lindsay Champion

Something tells me that John F. Crowley’s life motto may be Ghandi’s famous adage, “be the change you want to see in the world.” Crowley, the author of his first memoir, Chasing Miracles (co-authored by Ken Kurson, who has also co-authored memoirs by Rudy Giuliani and David Faber) may have led a humble, boring life if not for his three extraordinary children, Megan, Patrick and John Jr. Instead, Crowley and his wife, Eileen provide around-the-clock medical care for one child that suffers from ADHD and dyslexia, and two children with Pompe disease, a rare neuromuscular disorder. Besides Chasing Miracles, the family has been the subject of the book The Cure by Geeta Anand, and the movie Extraordinary Measures, starring Harrison Ford and Brendan Frasier.

In Chasing Miracles, Crowley describes his children as fun-loving, ordinary kids, but it quickly becomes clear to the reader that they are by no means ordinary. Megan and her younger brother Patrick were diagnosed with Pompe disease in 1998. Pompe disease is a genetic disorder that interferes with the body’s ability to store glycogen. Symptoms of Pompe disease include an enlarged heart and liver and muscular weakness. Throughout the book, Megan and Patrick zip around the house in 300-pound wheelchairs with attached ventilators. “Neither Patrick nor Megan has ever been out of earshot of an adult,” Crowley writes. Although the children are armed with a twenty-four-hour nursing staff, they both attend public school in Princeton, New Jersey, and expect to be treated like everyone else. Crowley spends the majority of the book relating anecdotes about Megan, who, as the rambunctious smart aleck of the bunch, is popular at school and adored by her father. Patrick is shy and more timid than his fearless older sister. The Crowleys’ oldest son, John Jr., has difficulty sitting still and is mentioned almost as an afterthought at the very end of the book. Most of Crowley’s time and energy go into taking care of his younger children, making John Jr.’s more manageable disabilities seem like non-issues. In a different family, John Jr.’s parents might fret about his health, but in the Crowley family, he’s just along for the ride.

When Megan and Patrick were diagnosed with Pompe disease, they were not expected to live more than a few years. There was no medication approved to treat the genetic disorder in 1998, so Crowley quit his management job at Bristol-Myers Squibb, raised $50,000 for Pompe research and made himself the CEO of his own start-up pharmaceutical company, Novazyme. Novazyme was bought out by Genzyme Corporation in 2001 and two years later, the first enzyme replacement therapy designed to treat Pompe disease was approved for use. In Chasing Miracles, Crowley explains that the enzyme was initially helpful to treat Megan and Patrick’s liver and heart enlargement, as well as their muscle strength. The added muscle strength, which temporarily allowed Megan to sit up by herself, was short-lived, while the heart and liver remain smaller. Extraordinary Measures, the movie based on the Crowleys’ life which premiered in theaters earlier this year, celebrates the success of the enzyme replacement therapy, but does not mention that the increased muscle function eventually reversed itself. “It was heartbreaking for the kids and devastating for Aileen and me when we fully grasped that the upward trajectory of improvement in strength was in fact waning,” Crowley writes. “We had dared to envision a more normal future for our children, dared to whisper of an almost normal life for them. But those whispers became ever more faint against the reality of the relentless progression of this horrible disease.” Although Crowley’s version is not identical to the heartwarming ending portrayed in the film, I prefer his more honest account.

Chasing Miracles gives readers a peek into the life of the Crowley family, and sometimes, it’s a tearjerker. Crowley often expresses his astonishment that despite Megan’s health problems, she still feels sad for other sick children. After a particularly painful and difficult procedure at the hospital to increase bone strength, Megan glanced at a group of children with cancer receiving chemotherapy treatments. “Megan has just been through holy hell for the last hour and a half,” explains Crowley. “She motions for me to come close so no one can hear and says, in her crazy little ventilator voice, ‘Dad, do you see all those kids over there? They all have cancer. I feel so bad for those kids. That is so not fair.’” Crowley expresses pride for his selfless and caring children, who have no idea that “they have given more than they will ever receive.”

What I like best about Crowley’s memoir is that it serves as an upbeat how-to book for any family suffering a hardship. Although I spent some of my time while reading brushing tears away with the back of my hand, I spent the rest of the book laughing. The author refers to his motorcade of handicapped vans that the family travels in as the “Crowley Fun Machine” and sees each day of potential disasters as adventures. With Crowley’s positive attitude, it’s no wonder his children are so full of energy. Instead of getting frustrated when a cross-country trip doesn’t run smoothly, Megan asks, “Daddy, if we were a normal family coming off a normal plane, why would they ever make a movie of us?”

Possibly most astounding about John Crowley is that he remains completely and entirely hopeful for the future of his children, and humankind. “In the next twenty to thirty years I truly believe that we will diagnose, treat and probably cure just about all genetic diseases,” he writes. Crowley’s confidence is so assured, he makes me feel at ease. Sure, why can’t we solve every genetic condition within the next thirty years? If everyone took a proactive approach to their own hardships the way Crowley and his family have done, why not? “The combination of risk and innovation has truly introduced a new golden age of medicine,” Crowley explains. “This is our hope; this will be our legacy.”

Books mentioned in this column:
Chasing Miracles by John F. Crowley (Newmarket Press, 2010)
The Cure: How a Father Raised $100 Million—And Bucked the Medical Establishment—In a Quest to Save His Children by Geeta Anand (William Morrow, 2006).


Lindsay Champion's writing has been featured in Time Out New York, The New York Press, McSweeney's, Fray Quarterly (available now at Barnes & Noble), Common Ties, SMITH Magazine, and in It All Changed in an Instant: More Six-Word Memoirs by Writers Famous & Obscure, published by Harper Perennial. Lindsay is a member of the Society of Professional Journalists and has written hundreds of articles for numerous Internet publications, including Travels.com, Livestrong.com and Trails.com. She received her BFA from NYU's Tisch School of the Arts, where she studied writing. After living in New York City for six years, Lindsay has relocated to Los Angeles for some reason. She lives in Studio City, California, with an albino goldfish named Betty White. New York Words is Lindsay’s web site. Contact Lindsay.