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The Crowley Family Journey Of Strength, Hope, And Joy
Newmarket Press
February 2010
On Sale: February 2, 2010
224 pages ISBN: 1557049106 EAN: 9781557049100 Hardcover
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Non-Fiction Memoir
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.
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