Suffering from a rare condition at an innocent age of only 15 months, identified as Pompe disease, Megan Crowley, given only two years to live, becomes the front and center of President Trump’s address to a joint session of Congress on Tuesday night. The winner of odds, and the bravest by heart, Megan Crowley stands tall and gets the seat of honour at the address alongside the First Lady, Melania Trump. In honour to Megan’s victorious journey so far, we here list 5 fast facts about her. Have a look.
Doctors concluded that Megan could only live for two years
According to a report by Fox News, Doctors said Megan could only survive for 2 years maximum due to a rare disease is known as Pompe. According to USA department of health and human services, the disease severely affects the growth of an enzyme which radically breaks down glycogen and transforms it into fuel for cells. The disease leads to serious hearts and respiratory problems and also gives rise to damaged muscles. Megan’s brother also suffers from the same condition.
Her father created a company in Biotechnology in a pursuit to find a cure
John Crowley who now is the CEO of Amicus Therapeutics, started the company initially in collaboration with his friend, also a bioscientist Dr. William Canfield, in order to find the cure for the rare disease. The company was initially named as Novazyme Pharmaceuticals which was later bought by the pharmaceutical giant Genzyme for $137.5million. The company was later successful to find the drug named as Lumezyme.
Her father efforts were later carried out in the form of a movie starring Harrison Ford in 2010
Megan’s father extraordinary journey in the quest to find the cure and in a race against time was later adapted as the story line for the movie Extraordinary Measures in the year 2010, that starred Harrison Ford in the lead role.
Megan and her family had met President Trump
About two months earlier, Megan Crowley and her family had planned to meet Trump privately in White House, to talk about the Pompe Disease. Later the family was invited as a special guest by President Trump.
John Crowley uploaded the proud moments on Facebook:
“Megan has been invited as one of a handful of special guests of the President and the First Lady for the Address to a Joint Session of Congress this evening. Megan and our family will meet privately in the Oval Office with the President to discuss the needs of people living with rare diseases, and especially advancing medicines for treatments and cures for ALL rare diseases. Megan today represents the heart, spirit and dreams of 30 million people in the United States alone who live with any one of over 7000 rare diseases. Fitting today on the 10th Anniversary of World Rare Disease Day. Love you Megan. Sooo proud– as always…!”
Megan Crowley is a college student in Notre Dame
“I have a movie made about my family and me entitled Extraordinary Measures (check it out, my dad has a cameo, I don’t. It’s fine. I’m over it.). I also have two books written about me one of them was the inspiration for Extraordinary Measures and the other written by my father (The Cure–Geeta Anand and Chasing Miracles–John F. Crowley). I am the President of the Make-A-Wish club on Notre Dame’s campus. I am a Film, Television, and Theatre major with a concentration in television.”