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Lunch » Tags » Books » Reviews » The Cure: How A Father Raised $100 Million--and Bucked the Medical Establishment--In A Quest To Save His Children

The Cure: How A Father Raised $100 Million--and Bucked the Medical Establishment--In A Quest To Save His Children

4 Ratings: 2.0
2006 non fiction book by Geeta Anand

At 15 months old, Megan Crowley was diagnosed with Pompe disease, a rare genetic disorder that was likely to reduce her life span to five years at most. Her five-month-old brother, Patrick, shared the same disease and its crippling progression. Their … see full wiki

Author: Geeta Anand
Genre: Biography
Publisher: Regan Books
Date Published: August 29, 2006
1 review about The Cure: How A Father Raised $100 Million--and...

An extraordinary story of dogged determination and boundless parental love.

  • Jul 26, 2009
Rating:
+4
There is an old axiom that advises "God does not give you more than you can handle".  But imagine living each day with the knowledge that two of your three young children have a rare and deadly disease that could claim their lives at any time......and there was no treatment available.   That was the heartbreaking dilemma that John and Aileen Crowley were presented with and somehow had to deal with on a daily basis.  Pulitzer-Prize winning reporter Geeta Anand chronicles the amazing story of the Crowley's epic struggle to keep their youngsters alive in "The Cure:  How A Father Raised $100 Million--and Bucked the Medical Establishment--in a Quest to Save His Children".   This is a compelling story that will grab your attention in Chapter One and simply never let go. 

Now as you might have surmised from the rather lengthy title of this book John Crowley was not exactly "Joe Sixpack".   Rather, John was a brilliant individual with a wealth of education.  Over the years John Crowley had received a degree from Georgetown's School of Foreign Service, spent a year and a half at the Naval Academy, scored a law degree from Notre Dame and last but not least earned an MBA from Harvard Business School.  John and his wife Aileen looked forward to a healthy and prosperous future together.  Aileen gave birth to their first child, a bouncing baby girl they named Megan on December 16, 1996.  Just 15 months later the Crowley's discovered that Megan was suffering from an extremely rare neuromuscular affliction known as Pompe disease.  People with Pompe fail to produce sufficient quantities of a particular enzyme and as a result there is progressive muscular weakness throughout the body.  Most young children diagnosed with Pompe at that time did not live past the age of 5.  To make matters worse, John and Aileen's third child Patrick, born in March of 1998 was also diagnosed  with Pompe.  Although several scientists and biotechnology companies were working on the problem there was still no treatment for Pompe.  The clock was ticking and the lives of his kids were at stake.  John Crowley was bound and determined to spearhead the effort to find a cure for Pompe.  He and Aileen would go to extraordinary lengths to achieve their goal.  This is what "The Cure" is all about. 

Over the next few years John Crowley would dedicate all of his time, talent and treasure in a valiant effort to save Megan and Patrick.  He worked tirelessly to raise funds to find a cure for Pompe and founded an organization known as the Children's Pompe Foundation.  Ultimately he would become the CEO of a company called Novazyme, a biotech firm dedicated to finding a cure for Pompe and other related diseases.  It was exhausting work that required literally every fiber of John's being.  Oftentimes,  the conflict of interest between his personal and professional lives put John at odds with the scientists and biotechnology companies he was working with.   Meanwhile, the extended battle to save their kids nearly cost John and Aileen their marriage.  John's work required him to be away from home much of the time leaving Aileen to take care of three little ones. While Aileen did have nurses to assist her at home every single day was fraught with danger.  Megan and Patrick were so fragile and frequently struggled with the plastic tubes that had been inserted into each of them to help them to breathe.  One wonders how John and Aileen managed to get through it all.  When I think about the trivial things I get upset about it makes me feel ashamed.

"The Cure:  How A Father Raised $100 Million--and Bucked the Medical Establishment--in a Quest to Save His Children" makes you stop and reflect about what is truly important in life.  Despite enormous hardships John and Aileen Crowley proved to be more than up to the challenge.  And in working so hard on behalf of Megan and Patrick the Crowleys also impacted other Pompe families around the nation who found themselves in the same boat.   "The Cure" is an inspiring and well-written book.  I don't know how the Crowley's found the strength to deal with the hand that they were dealt.  I became exhausted just reading about it.  Highly recommended!
An extraordinary story of dogged determination and boundless parental love.

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July 26, 2009
What a great review, Paul......and so inspiring. It just goes to show what creative spirits people have when push comes to shove. What a life these folks lead. I'm very impressed.
 
July 26, 2009
That is an amazing story. John Crowley sounds like an incredible man with quite the credentials. I guess it is testament to the idea that you should never give up!
 
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