One of President Donald Trump's guests during his first major address to Congress Tuesday night was diagnosed with a rare genetic condition of Pompe disease when she was an infant. Megan Crowley's honor coincided with the annual Rare Disease Day.
Trump cited Crowley, now 20, as an inspiration for his administration to confront and defeat rare diseases such as Pompe disease.
"Today is Rare Disease Day, and joining us in the gallery is a Rare Disease Survivor, Megan Crowley," Trump said, prompting the entire audience in the Capitol to erupt in a standing ovation.
Crowley has had Pompe disease since she was 15 months old. The National Institutes of Health (NIH) defined the debilitating condition as "an inherited disorder caused by the buildup of a complex sugar called glycogen in the body's cells. The accumulation of glycogen in certain organs and tissues, especially muscles, impairs their ability to function normally."
Pompe disease "is characterized by delayed motor skills (such as rolling over and sitting) and progressive muscle weakness," according to NIH's description of the disease. "The heart may be abnormally large (cardiomegaly), but affected individuals usually do not experience heart failure. The muscle weakness in this disorder leads to serious breathing problems, and most children with non-classic infantile-onset Pompe disease live only into early childhood."
Crowley was now a senior at Notre Dame University in South Bend, Indiana, Trump said. Her father has devoted most of the years Crowley has been alive to working to find a cure for Pompe disease. Megan's younger brother Patrick was also diagnosed with the disease, according to North Jersey.com. A motion picture about the Crowley was produced and debuted in 2010.
Prior to introducing Crowley, Trump devoted a hearty portion of his speech to lambasting the Affordable Care Act, also known as Obamacare, the signature national health care law enacted by former President Barack Obama. It was not clear if treatment for Pompe disease was covered under Obamacare.