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President honors spirit of Notre Dame student with rare disease


Megan Crowley listens as U.S. President Donald Trump addresses a joint session of Congress Feb. 28 in Washington. Crowley, a 20-year-old sophomore at the University of Notre Dame who was diagnosed with Pompe disease when she was 15-months-old, was recognized by Trump during his address. (CNS photo/Jonathan Ernst, Reuters)

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WASHINGTON (CNS) -- Megan Crowley, a University of Notre Dame student born with a rare disease, was recognized by President Donald Trump during his address to a joint session of Congress.

The president Feb. 28 acknowledged Megan Crowley, 20, who has Pompe disease, for her strength and character while living with the inherited disorder since being diagnosed at 15 months of age.

Trump pointed to Megan Crowley, who was seated in a wheelchair in the House of Representatives gallery and received two standing ovations, on Rare Disease Day. Traditionally marked on the last day of February, the day first was designated in 2008 by the European Organization for Rare Diseases.

Megan Crowley was not expected to live past 5, Trump said, but her father, John Crowley, founded a pharmaceutical company to develop the enzyme replacement treatment she needs to cope with symptoms of the disease.

"Megan's story is about the unbounded power of a father's love for a daughter," Trump said.

Parents John and Aileen Crowley attended the address. Megan Crowley's younger brother, Patrick, 18, also has Pompe disease. Another brother, John, 22, attends Holy Cross College in South Bend, Indiana. The college is a neighboring campus to Notre Dame.

Megan Crowley's father wrote about the family experience in Congress and the White House on Facebook Feb. 28.

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