Tuesday, June 1, 2010

Chasing Miracles, by John F. Crowley

It doesn't get much more inspiring than this.  A family learns that two of their children have a rare genetic disorder.  There is no cure, and neither child is expected to live past age two.  The older child shows a determination not to die, so Dad quits his job to start a new biotech company dedicated to finding a cure for the children's disease.  Not only does he successfully find a means to treat the disease and extend their lives, he makes millions of dollars in the process, which must help with all the medical bills.

The story of the Crowley family has been told in Geeta Anand's book The Cure: How a Father Raised $100 Millon--and Bucked the Medical Establishment--in a Quest to Save His Children and in the movie the book inspired, Extraordinary Measures, starring Brendan Fraser as John Crowley and Harrison Ford as Dr. Robert Stonehill, the medical researcher on whom the Crowley's place their hope.  Chasing Miracles is John Crowley's memoir, written during and after the filming of the movie, in which he offers personal reflections on their journey.
I couldn't help tears coming to my eyes every now and then, and was inspired by the spirit and perseverance of both the parents and the kids.  The kids suffer from Pompe disease, which weakens their muscles to the point that they can't walk, much less breathe, on their own.  Megan, the older child, doesn't let that slow her down socially or intellectually.  Her heart of compassion remains focussed on others, even in her most trying times, and she is popular with her classmate at school because of her charismatic personality.

Chasing Miracles  might be best read after seeing the movie or reading The Cure (I have done neither).  Crowley intertwines the story thoroughly enough that you get the idea, but the focus of Chasing Miracles is on their family's relationships and lifestyle and how they have drawn together to face the challenges of Pompe.  The overarching theme is that the doctors said that their children would not live past the next few months, but their collective determination has extended the children's lives so that their life expectancy is now an open question.  The children still are in wheelchairs, breath with breathing equipment, and need full-time care, but the Crowleys treasure every day they have, knowing how close they were to not having any.

In Chasing Miracles, I'm not sure Crowley mentioned Stonehill at all by name.  A friend who has seen Extraordinary Measures and knows something of the story said they (Crowley and Stonehill) had a major falling out.  Hmm. . . guess I'll have to read The Cure for the full story.

In a later chapter in Chasing Miracles, Crowley discusses the oldest child's Asperger's syndrome.  Most families would have enough to deal with just with that.  He is very high functioning, like most people with Asperger's, but does require quite a bit of supervision and guidance.  So I wonder how that is treated in the movie.

My youngest child has an unidentified genetic disorder.  It's not life-threatening like Pompe, but it limits her speech, eating, mobility, and self-care.  Our issues pale in light of what the Crowleys have come through, so their story really inspired me.  Keep the Kleenex handy.

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