John and Aileen Crowley were on top of the world. With a brand-new Harvard Business School degree, three beautiful children, a new house, and a great job, they thought that they had just entered the best years of life. Then doctors diagnosed their two youngest children with Pompe disease, and everything changed.
Fifteen-month-old Megan and five-month-old Patrick were given only months to live. Pompe disease, the Crowleys were told, was so rare that no company had yet developed a medicine to combat it. There was no cure, no treatment--only the gradual degeneration of muscle so that in the end, afflicted children would be unable to walk, eat, or even breathe on their own. It was a nightmare the Crowleys could hardly comprehend.
Based on this real family, a movie comes out January 22. Seems like a triumphant story and I for one will see it, interested in not only seeing kids in chairs on the big screen, but to relate to the mixed feelings of hope, despair and dealing with medical issues.
http://extraordinarymeasuresthemovie.com
http://www.crowleyfamily5.com/index.htm
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