Chasing Miracles, The Crowley Family Story - Part One: The Disease
- Culture Pop blog / "Extraordinary Measures" and my visit to the Crowley home | Click here
- The Crowley Family Story, Part One: The Diseases
- The Crowley Family Story, Part Two: Extraordinary Measures
- The Crowley Family Story, Part Three: The Family
- Brendan Fraser on playing the real John Crowley in 'Extraordinary Measures'
- Movie trailer / 'Extraordinary Measures' / Click here
I arrive at the Crowley home in the late afternoon on December 18th, hours before eighteen girls are expected to arrive for Megan Crowley’s thirteenth birthday party sleepover.The Crowleys’ Princeton, New Jersey home is beautiful, in the sort of way that houses in catalogues or movie sets are, and huge. But not at all unwelcoming; on the contrary, you can tell that it’s a loved house, the sort that is made for holidays with large extended families and after-school activities for three children and their friends.
A sixteen-foot Christmas tree twinkles in the foyer. Two adorable Jack Russell terriers adopted from Ireland scamper in the library. Balloons are being blown up in the kitchen. Twilight-themed party favor bags are lined in neat rows on the table. For most families, this scene alone would be a stellar achievement, reached with probably not a little yelling and a lot more stress. For the Crowleys, John and Aileen and their children, John Jr., Megan and Patrick, it’s part of a much bigger picture.
In 1998, when Megan Crowley was fifteen months old, she was diagnosed with a rare form of muscular dystrophy called Pompe disease. Her brother Patrick, who was seven days old at the time, was diagnosed four months later.
Pompe disease is a genetic disorder caused by a deficiency in the enzyme that breaks down glycogen. Sugar stored as glycogen builds up throughout the body’s muscles, depriving the cells of energy and leading to muscle atrophy. While Pompe doesn’t hinder mental function, it affects the skeletal muscles, diaphragm, nervous system, liver, and the heart. Most children die from respiratory failure or cardiac arrest as the heart slowly enlarges. Megan and Patrick were both expected to die within the first few years of their lives.
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