The inspirational story of Trinity alumna Aileen Holleran Crowley ’90 and her husband John in their quest to find a cure for their children’s life-threatening disease is the focus of a major motion picture, “Extraordinary Measures,” which will be released in theaters across the country on January 22. The movie stars Kerri Russell as Aileen Crowley, Brendan Fraser as John Crowley, and Harrison Ford as Dr. Robert Stonehill, the scientist who Crowley teamed up with to develop a life-saving cure.
Life changed abruptly for the Crowleys in 1998 when they were told that their two youngest children, Megan (then 15 months old) and Patrick (then just a few days old) had Pompe disease, a rare and nearly always fatal genetic neuromuscular disorder that affects only a few thousand children worldwide, usually leaving them with little to no muscle function, enlarged hearts, and severe difficulty breathing. The Crowleys embarked on a journey to get the best medical care for their children and find a cure for the disease. Frustrated with the slow pace of research on Pompe disease, John Crowley left his promising corporate career in 2000; he defied conventional wisdom and great odds, and risked his family’s future to pursue a cure for his children’s life threatening disease. With the full support of his wife, Aileen, he helped co-found Novazyme, a four-person biotechnology start-up company that was focused exclusively on developing a treatment for Pompe.
Over the next 18 months, he raised capital and grew Novazyme into a 120-person company. Crowley wrote, “We had a vision and a mission, and failure was not an option.” Novazyme was eventually merged into one of the world’s largest biotech companies, Genzyme Corporation. At Genzyme, Crowley continued the work to develop a medicine to save, extend, and enhance the lives of people with Pompe.
In January 2003, Megan and Patrick Crowley received the enzyme replacement therapy for Pompe disease. The Crowleys credit the experimental therapy with saving their children’s lives. Even with this drug, Megan and Patrick are still profoundly physically handicapped from the ravages of the disease on their skeletal muscles over the years, yet they lead fully active lives. Megan, 12 and Patrick is 11, are in school and enjoy family vacations and activities.
Aileen Crowley says that everyday with her children is a gift, adding that “they are so full of life and continue to inspire everyone, most especially John and me.” She says that living with Megan and Patrick’s Pompe disease “is a lifelong challenge that has taught me so much about life, family and love.” She says that the movie’s producers, director and actors “have been so passionately dedicated to telling our family story. We hope that the lessons in life that we have learned from our children’s special-ness will inspire others in the years to come.”
The movie, “Extraordinary Measures,” follows the remarkable story of the Crowley family, as they battle the medical and business establishments in a fight against the system and relentlessly pursue a cure for Pompe disease.
The compelling Crowley family story is told in two books. Chasing Miracles, The Crowley Family Journey of Strength, Hope, and Joy, which will be published in 2010, is a personal memoir written by John Crowley with a foreword written by Aileen Crowley. The Cure: How a Father Raised $100 Million – And Bucked the Medical Establishment – in a Quest to Save His Children, by Geeta Anand, was published in 2006.
View the movie trailer for “Extraordinary Measures.”