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In 'Cure,' a father tries to save his kids

The Cure: How a Father Raised $100 Million — and Bucked the Medical Establishment — in a Quest to Save His Children, By Geeta Anand Regan, 352 pp., $25.95

Within a year after graduating from Harvard Business School, John Crowley heard the worst news of his life. His 15-month-old daughter, Megan, was diagnosed with Pompe disease, a rare and fatal genetic disorder that attacks the muscles. Megan was not expected to live beyond age 5. Only a few months later, Crowley received a second blow. His infant son, Patrick, was diagnosed with the same illness. There was no known cure. Since the disease strikes fewer than 10,000 people annually , drug companies lack a financial incentive to develop a treatment. Refusing to accept this dire situation, Crowley set about to change it.

Geeta Anand, a former Globe reporter, offers a well-researched, skillfully written, and inspiring account of a man who wouldn't take no for an answer. Crowley did more than simply advocate and finance research into Pompe. When he discovered that no company was willing to fully commit to finding a cure, he started such a company himself, called Novazyme . Using absolutely everything he had -- his Notre Dame law degree, his Harvard MBA, his own money, his connections among friends and family -- Crowley immersed himself in the job of saving his children.

Crowley also tried to live a normal family life. During one of Megan's long hospital stays, when Crowley and his wife, Aileen, spent nights at their daughter's bedside, the exhausted couple escaped to the privacy of a cleaning closet, surrounded by wet mops, where they finally found time to make love. Two sick children needing constant medical attention put a huge strain on their marriage, and much of Anand's book is about how the couple learned to cope as a team.

While his wife took care of the children at home, Crowley did battle in the high-powered corporate world. A young, inexperienced CEO with a huge personal stake in his start-up pharmaceutical company, he approached some venture capitalists during his first week on the job. Not only did they refuse to fund him, they basically told him to get lost: "Young man, no venture capitalist is going to invest in this company, and that's just a fact." True to his nature, Crowley ignored the doors slammed in his face.

He called an old buddy from Harvard Business School who had become a partner at a Newton-based venture capital firm called Catalyst . Catalyst saw Crowley's start-up as a potential competitor and acquisition target of the industry's major player, Cambridge-based Genzyme , and thus invested $3 million in it. Catalyst's analysis proved accurate. In August 2001 , Genzyme paid $137.5 million for Crowley's company and made him a Genzyme senior vice president.

At Genzyme, Crowley continued to push hard for Pompe research and for the inclusion of his two children in clinical trials of new treatments. Some executives inside Genzyme believed Crowley had a clear conflict of interest, that he was bending corporate strategy based on his desire to save his kids . Crowley's children were rejected from more than one clinical study, being included only after he had resigned from Genzyme.

Having finally received the treatment that their father helped make available, Megan and Patrick Crowley lived beyond their fifth birthday, beating the prognosis for most Pompe patients. John Crowley has bought them time, and continues to work against the clock to save them. Anand has written an inspirational story about business, medical science, and one father's refusal to give up hope.

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