Friday the 5th of March

...to the ends of the earth

“We need a respectful, mutual listening, free of ideology and predetermined agendas.” Pope Francis, Let us Dream, December 2020

President honours spirit of Notre Dame student with rare disease

Megan Crowley, a University of Notre Dame student born with a rare disease, was recognised by President Donald Trump during his address to a joint session of Congress.

On 28th February, the president 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 five, 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.

Picture: Megan Crowley listens as US President Donald Trump addresses a joint session of Congress in Washington on 28th February. 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 recognised by Trump during his address. (CNS photo/Jonathan Ernst, Reuters).