Megan Crowley American with Pompe disease, daughter of John Crowley Date of Birth: . Country: USA

1. Megan Crowley: From the Shadows to the Limelight
2. Breaking Free
3. Navigating College Life
4. A National Inspiration
5. The Search for a Cure
6. A Father's Desperation and the Birth of a Biotech
7. A Lifeline on Christmas Eve
8. A Family's Journey in the Spotlight
9. Plans for the Future
10. Quirks and Favorites

Megan Crowley: From the Shadows to the Limelight

As the daughter of John Crowley, the pharmaceutical executive portrayed by Brendan Fraser in the Hollywood film, Megan Crowley has lived in the shadow of her father's extraordinary journey to save her life. Confined to a wheelchair with Pompe disease, Megan's voice has been limited by a tracheostomy tube and a jaw that opens only an inch.

Breaking Free

Undeterred, Megan has emerged from her father's narrative to share her own story through her blog, High Heeled Wheels. A sophomore at the University of Notre Dame with an enviable shoe collection, she aims to inspire others with rare and debilitating conditions. "The books and the movie focused on the parent perspective," Megan says, "but I wanted to tell it from my point of view. I want to show people with disabilities, both newly diagnosed and lifelong, that it's not a death sentence. You can have a disability and still live a fulfilling life."

Navigating College Life

Megan adapts to university life with assistive technology and the support of a nursing team. She attends lectures, studies, and cheers at games, particularly relishing the fast-paced action of basketball and the spectacle of football. She also volunteers and fundraises for Make-A-Wish. However, obstacles remain: not every dorm is wheelchair-accessible, and campus social events often revolve around food, which Megan relies on a feeding tube to consume. She also requires 24/7 medical care, but has found nurses willing to relocate with her from New Jersey. To her delight, Megan's dorm room has been customized with a remote-controlled door, a separate area for nurses, and an accessible bathroom with a roll-in shower.

A National Inspiration

In February, Megan was an honored guest at the White House, where President Donald Trump praised her as an inspiration during his State of the Union address. As a triple major in Film, Television, and Theatre, and American Studies, Megan has a talent for storytelling and captivating audiences. She emphasizes that she has never allowed self-pity to define her and that she has no desire to live a different life.

The Search for a Cure

In 1998, John and Eileen Crowley learned that their 15-month-old Megan had an extremely rare genetic condition known as Pompe disease (Glycogen Storage Disease Type II). Struggling to understand their daughter's condition, they delved into online research. They discovered that both parents were "silent carriers" of the disease, caused by a mutation in a gene responsible for cells' ability to break down glycogen. The condition leads to progressive muscle weakness, enlargement of vital organs like the heart, and severe respiratory distress. No cure existed. "We were told she would not live past two," Eileen recalls. "There was nothing we could do about it. We just tried to enjoy the time we had with her."

A Father's Desperation and the Birth of a Biotech

John Crowley, a 1992 graduate of Notre Dame Law and an MBA from Harvard, had a successful career in the pharmaceutical industry. His desperate search for information about Pompe disease led him to William Canfield, a glycobiologist researching enzyme replacement therapy. Together, they left their jobs to co-found a small biotech company, Novazyme Pharmaceuticals, in 2000. The startup's big break came the next year when Crowley's venture was acquired by Massachusetts-based Genzyme. Soon after, Myozyme, a breakthrough treatment for the inherited enzyme deficiency, was developed.

A Lifeline on Christmas Eve

On Christmas Eve 2002, the Crowleys learned that both Megan and their son Patrick, who also had Glycogen Storage Disease Type II, would be included in clinical trials for the experimental drug. John resigned from the company to avoid any conflict of interest. His daughter likes to say he gave her life twice. After infusions, Megan and Patrick's conditions improved almost immediately, although they eventually plateaued and started to decline. Nonetheless, the treatment stopped their hearts from enlarging and saved their lives. Today, roughly 1,000 people in the United States with Pompe disease receive Myozyme (now called Lumizyme), which was approved by the Food and Drug Administration in 2006.

A Family's Journey in the Spotlight

Wall Street Journal reporter Geeta Anand first chronicled the Crowleys' story in 2001, and her reporting formed the basis for her 2006 book, "The Cure." Three years later, director Tom Vaughan brought the family's story to the big screen in "Extraordinary Measures," starring Harrison Ford, Brendan Fraser, and Keri Russell.

Plans for the Future

"I take things day by day," Megan says of her future plans. "I definitely want to finish school at Notre Dame. I hope to move to Raleigh, NC, and get a job either with the Muscular Dystrophy Association or in media/communications for Make-A-Wish." "My overall goal," she adds, "is to get married and have four kids—two biological through surrogacy and two adopted. Ultimately, I just want to live a happy, healthy, and meaningful life."

Quirks and Favorites

Megan loves shoes, though she often must settle for children's designs because of her petite feet. She enjoys shopping, playing with her Jack Russell Terriers (Emmy and Bear), and listening to Luke Bryan and Carrie Underwood. Her one irrational fear: snakes.