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Megan Crowley was not supposed to live past the age of five. She is now a 20-year-old woman who was a special guest at President Donald Trump’s joint address to congress.
Crowley, who was just over one-year-old when she was diagnosed with Pompe disease, a deadly muscle-weakening condition, was mentioned during Trump’s Joint Address to Congress.
President Trump introduced Crowley as “an incredible young woman” who should “serve as an inspiration to us all.”
Crowley, from Princeton, New Jersey, was not expected to live past five after she was diagnosed with the inherited disease, which affects the ability of cells to break down glycogen, leading to progressive muscle weakness as well as the swelling of vital organs such as the heart and serious breathing problems. Her younger brother Patrick was diagnosed with the same genetic disease.
https://www.youtube.com/watch?v=xHgC-g5r5uo
Trump used the Crowley family’s fight against Pompe disease as an example of the pharmaceutical industry restraints he is seeking to cut at the federal level.
“Megan’s story is about the unbounded power of a father’s love for a daughter,” President Trump said.
“But our slow and burdensome approval process at the Food and Drug Administration keeps too many advances, like the one that saved Megan’s life, from reaching those in need,” he continued.
“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.”
Who is Megan Crowley?
Megan Crowley is a 20-year-old sophomore at the University of Notre Dame who suffers from Pompe disease. Not supposed to live past the age of five, Crowley attended President Trump’s first Joint Address at the age of 20.
The story of the Crowley family was turned into a Harrison Ford film called Extraordinary Measures in 2010.
Crowley’s father founded the company Novazyme Pharmaceuticals with bioscientist William Canfield, a company that worked towards developing am enzyme therapy treatment for Pompe disease. His firm was bought by pharmaceutical company Genzyme for $137.5million and a lifesaving drug for the condition was created thereafter.
Megan and Patrick have both taken part in the trial for a new drug that may help with the disease.
