President Donald Trump introduced the nation to a woman named Megan Crowley, who has a rare disease that doctors thought would kill her in early childhood. She is currently 20 years old, and the president hailed her as an “inspiration to us all.”
So who is Crowley exactly?
Crowley was born with a rare hereditary disease called Pompe disease, which causes muscles to degenerate because the body is unable to fully break down glycogen. As a result, breathing, moving and swallowing are incredibly difficult for those afflicted with the disease. Organs such as the heart and liver are overly inflated by the condition. Those who are diagnosed shortly after birth–as Crowley was–are at risking of dying from heart or respiratory problems stemming from the disease. Crowley’s brother, Patrick, also was born with the disease.
Crowley’s father, John, refused to accept the prognosis that his children would die early on from the disease, so he established a company called Novazyme Pharmaceuticals to discover a drug that would save the lives of his children. After Genzyme purchased the company, the drug was developed: Lumizyme, which provides enzymes that would be otherwise be absent in Pompe disease patients. The drug has resulted in both Megan and Patrick Crowley living far longer than expected.
Megan Crowley is now in her second year at the University of Notre Dame, where she majors in theater, television and film. She maintains a blog called High Wheeled Heels, where she writes weekly blog posts about her latest activities and how she has dealt with Pompe disease.
“Today I am still smiling, having a good time, laughing, and most importantly living as a college sophomore at the University of Notre Dame!” Crowley wrote. “So yes, with love, patience, and faith I have made my way through 20 years on this earth. My journey has been one of hope, strength, and joy. This is my blog about my life, family, nurses, school, Pompe, and really anything. Here is my journey through life despite Pompe, and welcome to it…let’s go for a ride, together!”
Here are the details of her “fun facts” sections:
- I have two extremely annoying brothers who I love till the ends of the earth and would do anything for:
- John (22 who is living with Aspergers while attending Holy Cross College in South Bend, IN)
- Patrick (18 also living with Pompe while still living at home)
- My parents have been married for 26.5 years (can you say WOW?)
- My favorite color is PINK!
- I have two crazy Irish Jack Russells
- Annie (who is 12)
- Little Bear (who is 9)
- I absolutely love country music, especially Luke Bryan and Carrie Underwood (if anyone could get me to meet one or both of them I’ll owe you everything)
- I was a Maid of Honor when I was 14 to Renae (she’s also my third cousin and nurse [in that order] as well)
- I have a niece, Addie (2.5), and a nephew, Luke (11 months) from Renae and her husband, Josh
- I have a Jesus Sister, her name is Nancy (just so happens she’s my third cousin and nurse [in that order] as well)
- I was in Nancy’s wedding as well
- I have a total of 11 nurses between South Bend, IN and Princeton, NJ
- I LOVE shopping (except for tools and stuff like that, ew)
- I really love shoes (hence the picture), but my feet are so tiny (size 4 maybe 5) it’s sometimes hard to find non-kiddish ones
- 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
- I absolutely HATE snakes
As she mentions in her blog, there is a movie called Extraordinary Measures about her and her father’s efforts to save her life, starring Harrison Ford and Brendan Fraser.
Trump highlighted Crowley’s story of how the innovation of the private sector can save lives, but the Food and Drug Administration’s (FDA) lengthy approval process stifles such innovation and prevents life-saving drugs from reaching the market. In fact, according to Rare, “The FDA didn’t approve treatment for Pompe disease until 2014, many years after Crowley was diagnosed with her illness.”
“So yes, with love, patience, and faith I have made my way through 20 years on this earth.”
Megan Crowley
Indeed, the story of Megan Crowley and how her father was able to save her and her brother’s life is truly a heartwarming, inspiring story that is reflective of the greatness of America.
(H/T: Heavy.com)
Follow Aaron Bandler on Twitter @bandlersbanter.