John Crowley and Dr. Kasturi Haldar introduced Thursday night's advance screening of "Extraordinary Measures" with words of hope about the fight against rare and under-researched diseases.
Crowley, a 1992 Notre Dame Law School alumnus, and his family are the inspiration of the film starring Brendan Fraser and Harrison Ford. The two youngest Crowley children, Megan, 13, and Patrick, 11, suffer from Pompe disease, a rare neuromuscular disorder.
Haldar, the director of Notre Dame's Center for Rare and Neglected Diseases, described the film as "the amazing story of the amazing success they've had at fighting back this disease and keeping their children alive."
Crowley's wife Aileen accompanied him to the screening. Haldar praised the couple for their "remarkable value of life."
"In comparison, the rest of us have a very poor understanding of it because we take it so much for granted," she said.
Crowley talked about valuing life in his remarks, sharing vignettes from his soon-to-be-released memoir titled "Chasing Miracles: The Crowley Family Journey of Strength, Hope and Joy," that he co-authored with Aileen.
"Ours is not a sad and heavy life," Crowley said, noting the film captures the spirit of the family "incredibly well."
He said if there was anything the family learned from the film, it was about chasing miracles.
"For us, chasing miracles has a double meaning," Crowley said. "Yeah, it's about chasing the miracle and the cure and the treatments to extend and enhance people's lives, but it's more than that, and this took a while for us, it took while for me, to realize that the kids are a miracle, that life is a miracle."
He said he hopes the audience takes away from the film that life is not about what happens but how one lives and how one responds.
The Crowleys' lessons in strength, hope and joy came mostly from their three children.
"We've learned more from them than we've ever taught them," Crowley said.
The three vignettes reflected those themes and described the children's resilience and determination and how the battle against rare and untreatable disease is bigger than any one person.
The largest section in the book, however, is about joy, Crowley said.
"We learn to live life every day," he said, and the family has come to value spending time with each other and not feeling sorry for themselves.
Both speakers addressed the devastation in Haiti following this week's earthquake, and Haldar asked for a moment of reflection and prayerfor the country and for the Notre Dame Haiti program in its battle with disease there.
The two Thursday evening screenings of "Extraordinary Measures" at the Browning Cinema in the DeBartolo Performing Arts Center were sold out.
