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Charting a desperate hunt for a cure

Enid Parker / 4 June 2010

In 1998, John and Aileen Crowley’s two youngest children, Megan and Patrick, were diagnosed with an often fatal neuromuscular disorder known as Pompe disease, which was so rare that no company had yet developed a medicine to 
combat it.

John Crowley, however, refused to accept this fate — he quit his job and invested his life savings in a biotechnology start-up company in order to find scientists who could develop a replacement enzyme that would keep the disease at bay. To date he has raised more than $100 million to launch biotechnology companies to develop a cure.

Wall Street Journal reporter Geeta Anand first heard John’s story when she was covering the biotech beat in New York in early 2001. She says, “Someone introduced me to him and told me about his quest to save his children. At the time, he had just started a biotech firm, Novazyme, and was trying to get a scientific discovery into clinical trials to make a medicine to try to save his children. They were four  and three-years-old, already in wheelchairs and on ventilators. He knew he was in a race against time to save them.”

Geeta’s first book The Cure relates, in heartfelt detail, John’s story — one that encompasses cutting-edge science and business acumen as well as the remarkable strength of the human spirit in adverse circumstances.

Geeta believes the book has “many messages” and says, “One is about the power of parental love and the extent a parent will go to try to save a child. The other is something that John discovers through his quest to save his children — that is, that people can live very full lives even if they are profoundly handicapped, and that in that handicapped state, life is still worth living for many people if they are surrounded by love. And finally, there is also the message that life is tenuous and you never know what tomorrow will bring — so live each day to the fullest. This is something the Crowleys learned the hard way because they faced the very real possibility that their children could die any day.”

She feels the book “will definitely generate awareness about the rare Pompe disease” and “will be helpful because the disease is difficult to diagnose, so the more people who know about the symptoms, the better”.

She says donating 10 per cent of her payments from the book’s sales to the Muscular Dystrophy Association was Crowley’s choice, adding, “Pompe disease is a similar disease to muscular dystrophy. For his help with the book, John wanted some of the money to go towards helping handicapped kids, and if possible, kids with a similar disease. So we decided to donate to this association.”

The book also inspired a Hollywood film, Extraordinary Measures, which Geeta refers to as “beautiful, funny and inspiring.”

She says, “It is different from the book in some places, but the spirit is the same. The movie captures the positive, never-say-die and humorous attitude of the Crowley family. It isn’t sad — though there are sad parts, and it is tremendously uplifting. Harrison Ford is believable in his difficult scientist role and Brendan Fraser is loveable as John Crowley.”

Geeta, who is based in Mumbai, says she’s “working on a second book” and adds, “It’s a memoir about my family. I don’t want to reveal too many details as yet, but it will span several generations — from my grandparents fleeing Pakistan during the partition, to my father being sent to study in America in the 1950s and to my return to India two years ago to raise my children here.”

news@khaleejtimes.com

 
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