When John and Aileen Crowley learned that their two youngest children had a rare and little understood genetic disorder, they didn't hope for miracles: they made them happen.
In 1998, 15-month-old Megan and 4-month-old Patrick were diagnosed with Pompe disease, a rare and fatal neuromuscular disorder that affects only a few thousand children worldwide, usually leaving them with little to no muscle function, enlarged hearts, and severe difficulty breathing. The Crowleys were told to take their children home and "enjoy their short time together...there is nothing that can be done."
Raised in a blue-collar neighborhood in northern New Jersey, John Crowley, a recent Harvard MBA graduate working at Bristol-Myers Squibb, was just beginning to taste success in corporate America. But now he was absolutely determined to find a treatment to save his children's lives. Frustrated with the pace of Pompe research, Crowley walked away from the corporate world at the age of 31 to help co-found a start-up biotech company, focused exclusively on producing a lifesaving medicine.
In Chasing Miracles, John Crowley writes from his heart about how he and his wife set out to do "whatever it takes" against phenomenal odds to help Megan and Patrick first to survive, and then to thrive—and to keep their family, including oldest son John Jr., together and their marriage strong. He tells about learning to ask for help, about not losing faith, about coping with adversity, about the generosity and kindness of others, and, most importantly, about what it means to never, never quit.
As Aileen Crowley writes in her foreword, "This book is our family's attempt to share much of what we have learned, especially from our children, who have taught us more about life and love than we have ever taught them."
About the Author
Ken Kurson is the founder of Green, a financial magazi
John F. Crowley is an American businessmanand social entrepreneur. The son of a NewJersey cop, who died on duty when John was 7 yearsold, he has earned degrees from GeorgetownUniversity, Notre Dame Law School, and theHarvard Business School. He worked for Bristol-Myers Squibb before leaving to take a position asCEO of a start-up biotech company searching for atreatment for Pompe disease, the rare genetic disorderthat affects his two youngest children.
Crowley is currently the President and CEO ofAmicus Therapeutics, a publicly held biopharmaceuticalcompany working on the development ofdrugs to treat a range of human genetic diseases anddiseases of neurodegeneration. A widely acclaimedpublic speaker, he also serves on the board of theNational Make-A-Wish Foundation and is a commissionedofficer in the U.S. Navy Reserve, assigned to the U.S. Special Operations Command.
John and his wife, Aileen, live in Princeton, New Jersey, with their two sons, John Jr. andPatrick, and their daughter, Megan.