During his joint address to Congress tonight, Feb. 28, President Donald Trump called special attention to one guest in the audience: Megan Crowley, a young woman with Pompe disease.
“An incredible young woman is with us this evening who should serve as an inspiration to us all. Today is Rare Disease Day, and joining us in the gallery is a rare disease survivor, Megan Crowley,” said Trump, and the crowd sprang up to give her a standing ovation.
— BBC News (World) (@BBCWorld) March 1, 2017
Crowley, 20-year-old sophomore at the University of Notre Dame, and her father, John, had met with Trump earlier in the day to discuss treatments for rare diseases like Pompe disease.
Crowley was diagnosed with the disease when she was 15 months old, and was not expected to live past age 5. Her brother also has Pompe disease, and their father went on to found a company — Novazyme Pharmaceuticals — focused on protein engineering technologies that can be used to treat the disease.
The treatment is credited with saving the lives of both children with Pompe, and in 2010 their story in was made into the movie “Extraordinary Measures,” which starred Harrison Ford, Keri Russell, and Brendan Fraser.
Pompe disease is an inherited genetic disorder that causes a certain kind of sugar to build up in the body’s cells, ultimately preventing the cells from functioning normally. The cells most likely affected are in certain organs and muscle tissue.
As a result, those with Pompe disease can experience progressive muscle weakness in the heart, liver, skeletal muscles, and nervous system.
Megan has a blog called High Heeled Wheels where she writes about her life — and her role as president of Notre Dame’s chapter of the The Make-a-Wish Foundation — with zest and openness. “I have never in my life been out of eye/earshot of my parents or a nurse. That means I have zero privacy … ever,” writes Megan. “Most of you will probably want to shoot yourself when you read that. Honestly, because I grew up like that I am completely accustomed to it and I think that it is partly why I am so open.”
In response to the question, “Does Pompe affect your brain?,” Megan’s sassy reply is: “I’m a sophomore at Notre Dame, what do you think?”
But some on Twitter were quick to point out that Crowley could suffer should Trump move ahead with his plans to repeal the Affordable Care Act (ACA), known colloquially as Obamacare. Repeal of the ACA was a signature topic in Trump’s joint address on Tuesday night.
— ✗ (@theforcefuI) March 1, 2017
— JackiSchechner (@JackiSchechner) March 1, 2017
@POTUS, Megan Crowley's life depends on a drug that costs an average of $298,000 a year, per patient
— Carla W (@FlamingTornado1) March 1, 2017
And yet as one Twitter user aptly pointed out:
No matter politics, journey of #Megan Crowley and her father highlights the hope of what America is and what we can overcome
— Kathryn Cantwell (@KateMCantwell) March 1, 2017