The college sophomore who wasn’t supposed to live past the age of five: Inspirational story of Megan Crowley, the rare disease sufferer who was a special guest at Trump’s speech
Megan Crowley was diagnosed with Pompe disease at just 15 months old
She and her brother, who also has condition, were given just a few years to live
Father founded pharmaceutical company that helped develop pioneering drug
Her story was the inspiration behind the Hollywood film Extraordinary Measures
By EMILY CHAN
DailyMail.com
1 March 2017
A 20-year-old woman who was not expected to live past the age of five when she was diagnosed with a rare condition was a special guest at President Donald Trump’s joint address to congress.
Megan Crowley, who was just 15 months old when she was diagnosed with a deadly muscle-weakening condition called Pompe disease, got a special mention during Trump’s speech on Friday night.
The President introduced Megan, who received a standing ovation, as ‘an incredible young woman’ who should ‘serve as inspiration to us all’.
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.
The condition leads to progressive muscle weakness and the swelling of vital organs such as the heart, as well as serious breathing problems.
Megan’s younger brother Patrick was diagnosed with the same genetic condition shortly after, having been born just week earlier.
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