SYNOPSIS
A personal memoir from the family that inspired the film Extraordinary Measures, starring Brendan Fraser, Harrison Ford, and Keri Russell—a father’s 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.
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.
John and his wife, Aileen, live in Princeton, New Jersey, with their two sons, John, Jr. and Patrick, and their daughter, Megan. Both Patrick and Megan have been diagnoised with Pompe disease.
