The Cure

by Geeta Ananda

From Amazon: "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 father, John Crowley, a freshly minted Harvard MBA graduate, was determined to use his brains and connections to find a cure. He started a family foundation to fund research on Pompe disease and eventually headed a biomedical start-up company with a promising approach. Ironically, the more involved he got in efforts to find a cure, the slimmer the prospects were for his own children as hard business decisions and conflict-of-interest questions thwarted his efforts. Blocked from getting his children into clinical trials that could prolong their lives, and watching them grow weaker and weaker, Crowley concedes that he was occasionally tempted to simply steal the precious drugs. But he pressed ahead. Anand, Pulitzer Prize-winning reporter with the Wall Street Journal, delivers a detailed and heart-wrenching account of a father's extraordinary efforts to save his children and find a cure for a debilitating and life-threatening disease."Vanessa Bush
The movie "Extraordinary Measures" is based on this book.