She Was Not Expected to Reach Age Two, and Now She Helps Sick Children
After an experimental treatment helped her grow stronger in college, she completed two degrees and now supports children facing serious illness.
Joys of Compounding · John Crowley - Biotech's Chief Evangelist - [Art of Investing, EP.15]By her sophomore year at Notre Dame, Megan Crowley was getting weaker. People had trouble understanding her speech. She could barely grip her cell phone, which was her main way of communicating with her parents.
Then she started taking an experimental drug for Pompe disease, a rare inherited condition that weakens muscles, developed by the company led by her father, John Crowley, a biotech executive. Her father said that within a few infusions her speech grew clearer, recalling, "She was holding her head upright. She went from being able to barely hold her phone to curling five pound weights within months." He likes to joke about the result, telling Megan that clearer speech was a rough outcome for Mom and Dad.
Since then she has finished college, earned a master's degree, and gone to work at Make-A-Wish helping children with serious illnesses.
The diagnosis came on Friday the 13th in 1998, when she was 15 months old. Doctors thought she might die before she turned two. John Crowley said what he prayed for then was "just please give her the time to just blow out the candles on her birthday cake one more time."
She got that time, and then much more. She made her way through high school and to Notre Dame, where she finished on schedule with two majors. She spent almost every night of college in her dormitory, cared for by nurses, aides, and nursing students, along with dozens of young women in her dorm, Ryan Hall, who helped with wheelchair transfers, clearing snow, and whatever else came up. For a freshman capstone assignment that was supposed to be an autobiography of no more than nine pages, she wrote 38 pages at age 18, because she had already lived so much.
She went on to earn a master's degree in social work at the University of North Carolina. Then she spent a year working as a school social worker at the Princeton middle school that had once supported her, alongside the staff who had helped her when she was a student there. Now she is assistant director of mission integration at the Make-A-Wish Foundation of New Jersey, where, her father said, she "set up an alumni program" and "works in communications and program support."
Her father says his children taught him and his wife more about living than the parents ever taught them. He describes his daughter as a quiet example for wish children and their families going through a hard time, someone who encourages them without calling attention to herself.
Questions people ask
What is Pompe disease?
Pompe disease is a rare inherited disorder in which the body lacks an enzyme needed to break down stored sugar in muscle cells. The buildup damages muscles, including the heart and the muscles used for breathing, movement, and speaking. It is treated with manufactured enzymes given by infusion, but the treatment manages the disease rather than curing it.
What does Make-A-Wish do?
Make-A-Wish grants wishes to children diagnosed with critical illnesses, such as trips, meetings with heroes, or special gifts. Local chapters, including Make-A-Wish New Jersey, arrange the wishes with families, donors, and volunteers. Many former wish recipients stay connected through alumni programs.
What is Notre Dame's Ryan Hall?
Ryan Hall is an undergraduate women's residence hall at the University of Notre Dame in South Bend, Indiana. Like other Notre Dame dorms, it has a strong community culture in which students live together for multiple years. That community support was central to Megan Crowley's college life.