Synopses & Reviews
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."
Synopsis
In this memoir from the family that inspired the upcoming film "Extraordinary Measures"--starring Harrison Ford, Brendan Fraser, and Keri Russell--the Crowleys describe their efforts to find a cure for their two children's rare genetic disorder, Pompe disease.
Synopsis
A personal memoir from the family that inspired the film Extraordinary Measures, starring Brendan Fraser, Harrison Ford, and Keri Russell—a fathers story of his determination to save the lives of his two youngest children born with a rare genetic disorder and finding hope, strength, and joy despite extraordinary challenges.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.
John Crowley was absolutely determined to find a treatment to save his children's lives. At the age of 31, he walked away from the corporate world to help co-found a start-up biotech company, focused exclusively on developing a treatment for Pompe.
A truly uplifting and inspiring book that captures this remarkable family's everyday life, this is a memoir about life and love; about coping with adversity; and, most importantly, about what it means to never, never quit.
About the Author
John F. Crowley is an American business and social entrepreneur. The son of a New Jersey cop, who died on duty when John was 7 years old, he has earned degrees from Georgetown University, Notre Dame Law School, and the Harvard Business School. He worked for Bristol-Myers Squibb before leaving to take a position as CEO of a start-up biotech company searching for a treatment for Pompe disease.
Crowley is currently the President & CEO of Amicus Therapeutics, a publicly held biopharmaceutical company working on the development of drugs to treat a range of human genetic diseases and diseases of neurodegeneration. A widely acclaimed public speaker, he also serves on the board of the National Make-A-Wish Foundation and is a commissioned officer 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. and Patrick, and their daughter, Megan.
Ken Kurson is the co-writer of Rudy Giulianis New York Times bestseller Leadership and David Fabers The Faber Report. He has also written for Forbes, Money, and The New York Times, and has been a contributing editor at Esquire for more than ten years.