Rare Disease Report

John Who? Daughter of Pharma CEO Steps Out of Father's Shadow

JUNE 28, 2017
James Radke
Megan Crowley, a soon-to-be junior at the University of Notre Dame, is loving life.
No longer living in the shadow of her father’s extraordinary career, Megan, the daughter of Amicus CEO John Crowley, has succeeded beyond expectation – as a student at Notre Dame, the president of a Make-A-Wish club, a rare disease blogger, and special guest of President Donald Trump at his inaugural speech to the joint sessions of Congress.
Not bad for someone who cannot walk or breathe on her own.
People first became aware of Megan in the film, Extraordinary Measures, which starred Harrison Ford and Brendan Fraser, and detailed the herculean efforts that her father performed to find a treatment developed for his daughter’s infantile Pompe disease; a rare lysosomal storage disorder that causes a patient’s muscles to weaken due to a deficiency in the enzyme alpha-glucosidase (GAA).
What the movie failed to convey, though, is that as one of the earliest recipients of the enzyme replacement therapy, Megan is familiar and comfortable with being the first to try something new.
In an exposé by Notre Dame, it was made clear that Megan is not only attending the college of her dreams, but she is exceeding all expectations and has taken on more responsibilities with each passing year.
 “We never even dreamed about Megan going to any college, let alone Notre Dame,” said John Crowley.  “Getting Megan to kindergarten at the time we thought was the most daunting, overwhelming thing we’d ever undertake as a family. Then think forward all the way to twelve years later, her getting ready to go to college.”
Megan’s mother Aileen is less surprised by how much Megan has achieved.
“ We have taught Megan that she is no different from anybody else. Just because she can't walk or breathe on her own that doesn't mean that she can't do everything - just about anything anybody else can do,” she said.
As for Megan’s routine, it is far from normal.  It is highly scheduled, with nurses and caregivers always on hand to help her shower, feed, take notes, and get around.
Fellow residents at Ryan Hall help, too. Approximately 6 times a day, Megan needs to be transferred to/from her wheelchair while in residence. Her fellow residents are on a volunteer schedule to help the sole caregiver conduct the 2-person task.
While Megan’s college life may seem peculiar to some, it is the only life Megan knows; she embraces it.
Her blog, High Heeled Wheels, is filled with posts displaying her eternal optimism and drive to succeed at whatever she immerses herself in. Between blog entries that describe adventures like her travels to North Carolina to see family, going to a Hillary Duff concert, and participating in a dance marathon, are details of her spinal surgery in 2013. The surgery allows her breath more easily and do things like attend a wedding, even though her 500-pound wheelchair had to lifted up the church stairs by groomsmen so she could serve as the flower girl.
For each blog post, the underlying tone remains the same – optimism.
Megan’s optimistic outlook extends far beyond Notre Dame, too. “I definitely want to graduate from ND, hopefully move to Raleigh (N.C.) and work for the Muscular Dystrophy Association or Make-A-Wish in media or communications. I do want to get married and I want to have four children, two via surrogacy and two from adoption. Ultimately I just want to live a happy, healthy and meaningful life.”
A short video of Megan by the University of Notre Dame is shown below:

Be sure to read Megan’s blog at highheeledwheels.com. To stay up to date on Megan and the inspirational stories of others, be sure to follow us on Twitter and Facebook.

Copyright © RareDR 2013-2018 Rare Disease Communications. All Rights Reserved.