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Chasing Miracles, The Crowley Family Story - Part One: The Disease


Published Thursday, January 21, 2010, 4:46 PM
Updated Friday, January 22, 2010, 4:55 PM

 

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The Crowley Family: Megan, Aileen, John, John Jr., and Patrick.
Photo by Brian Doben

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.

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