Megan Crowley was born with Pompe disease, a genetic disorder with a short life expectancy. After her brother was born with the same condition, her father, John Crowley, quit his job and started the biotech company that subsequently invented the life saving treatment for both children. The family’s incredible story has been made into a film starring Harrison Ford and The Wall Street Journal has covered Megan’s journey over the years. Including her time in high school when she endured a risky spinal surgery to improve her posture and quality of life.
On May 19, 2019 Megan graduated from Notre Dame and will be attending graduate school at UNC Chapel Hill in the fall. The treatment has allowed her to live a full life and set big goals for the future but she still faces hurdles in her day to day that would be unimaginable to many of us. Because Pompe weakens her muscles she can not breathe unassisted and a 24 hour nurse staff accompanies her throughout every daily activity. I spent several days in South Bend in April 2019 following Megan’s busy schedule and active social life on campus. Journalist, Geeta Anaand, wrote a book about the Crowley family and shared the latest chapter of Megan’s life.