Chasing Miracles

Book excerpt: 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.