Posted by: Debbie Abrams Kaplan | January 2, 2010

Extraordinary Measures

There’s been a lot of publicity here in New Jersey about the movie Extraordinary Measures that was just released. It’s a real life story about a New Jersey couple whose son and daughter have a genetic enzyme deficiency, called Pompe disease. It’s an “orphan” disease (not many out there), where the body is missing an enzyme to process glycogen, so it stores glycogen instead. Without treatment, the disease is fatal. This article explains a bit about it.

The reason I bring this up is because my dear friends Darcy and Bob had a child with Pompe’s. His life was extended through a clinial trial with the treatment developed by Crowley’s company. Fortunately for the Crowleys, the treatment saved their kids lives, and they are alive and thriving.

My friends’ son Kyle was helped for a short time by the treatment, but he passed away not long after his first birthday. Kyle would have celebrated his 9 year birthday this month, and I want to remember him here.

My heart goes out to those families who are battling diseases with and for their kids. I’m grateful that Kyle had the opportunity to test out this treatment, and that his life was extended because of it. He gave his family a lot of joy during his short life.


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