Megan, from Princeton, New Jersey, was not expected to live past the age of five after being diagnosed with the inherited disease, which affects the ability of cells to break down the sugar glycogen.
Megan, from Princeton, New Jersey, (pictured aged nine with her mother Aileen and brother Patrick, then eight, in 2006) was not expected to live past the age of five after being diagnosed with the inherited disease Her father John (pictured right, with eldest son John Jr, second from right) founded the company Novazyme Pharmaceuticals, which worked towards developing a pioneering enzyme therapy treatment for Pompe disease The Crowleys' remarkable story was turned into a film called Extraordinary Measures in 2010.
Megan, Patrick and their parents John and Aileen (back row, second and third from right) at a screening of the show with the star-studded cast, including Harrison Ford, Keri Russell and Brendan Fraser It's caused by a defective gene that results in a deficiency of an enzyme, acid alpha-glucosidase.
'If we slash the restraints, not just at the FDA but across our Government, then we will be blessed with far more miracles like Megan.
In fact, our children will grow up in a Nation of miracles.' Following yesterday's visit to Congress and a meeting with the President in the Oval Office, Megan's father John posted on Facebook: 'I cannot tell you what it means as parents for me and Aileen [Megan's mother] to watch as the President of the United States and all of our nation's leaders give your daughter two standing ovations for her strength, courage and character.