It was surreal to watch my daughter's friend Megan Crowley get introduced by the President of United States last night.

It was a fitting tribute top a family that has been through so much adversity with two children suffering and battling Pompe's Disease. Megan is an extraordinary young woman. She faces her fear and suffering with strength, character and even a little humor.

The entire Crowley family — John, Aileen, Megan, Patrick and John Jr. — face obstacles that could have easily broken others. The Crowleys stand strong, united, patriotic, courageous and defiant in the face of a rare disease that prior to John's relentless pursuit of a treatment would have been a death sentence.  John Crowly founded a company that helped develop the drug that made Megan's longevity possible.

To really understand the family and the battle they continue to fight, the best thing you can do is pick up a copy of Geeta Anan's book, "The Cure, How a Father Raised $100 Million--and Bucked the Medical Establishment--in a Quest to Save His Children" — and if you have some time, catch the movie Extraordinary Measures, starring Brendan Frazier and Harrison Ford.

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