WASHINGTON — When Wall Street Journal reporter Geeta Anand met John Crowley and his family in 2001 she felt a certain kinship.
Anand’s daughters were close in age to two of the Crowleys’ three children. And the Crowley family, like Anand, is Catholic.
But Megan and Patrick Crowley, the younger children of John and Aileen Crowley, had a rare illness called Pompe disease that was slowly killing them.
The story of John Crowley’s obsession with finding a treatment that would keep his sick children alive became a series of articles in The Wall Street Journal and, in 2004, a book called “The Cure.” A movie based on the story, called “Extraordinary Measures,” premieres nationwide Jan. 22.
“I just thought there was something so moving about a dad trying so hard,” said Anand in a telephone interview from Mumbai, India, where she is now based for the Journal.
The book details the path that led John Crowley to give up a lucrative job in the pharmaceutical industry to establish a foundation and his own biotech company dedicated to isolating the enzyme that could reverse some of the effects of Pompe disease.
Crowley worked with several researchers who were making progress toward finding a treatment for Pompe disease and raised millions of dollars to move the research forward. In the movie, Harrison Ford as the eccentric Robert Stonehill represents a composite of those scientists.
Although Crowley’s primary goal was to get his children into clinical trials for the treatment, his role in the biotech company led to conflict-of-interest charges that actually delayed their involvement.
Anand said that when she was writing her book, most publishers turned it down, saying, “Books about sick kids don’t sell.”
“But this wasn’t about sick kids, but about a human struggle,” she said. “It was about a huge challenge. Trying to save his kids was John Crowley’s challenge.”
Although the film makes no reference to the family’s faith, Anand said John Crowley was “quite intensely” Catholic.
“Even when the kids were sick he went to church every single day,” she said. “He drew a lot of inspiration from his parish priest,” who had been married before his ordination but “lost his whole family in a car accident,” she added.
Crowley, portrayed in the movie by Brendan Fraser, was a classic overachiever who attended the U.S. Naval Academy and Georgetown University as an undergraduate, then earned a law degree from the University of Notre Dame and a master’s of business administration from Harvard Business School.
But when his daughter Megan, then almost 2, was near death from pneumonia in 1998, Crowley felt helpless. In the book Anand described him this way:
“From his years as a devout Catholic, John looked in his heart for what he could hang on to now. He’d been an altar boy. He still had the second-grade CCD book he’d used in preparing for first Communion the year his dad had died. He’d kept his religious faith in the face of that monumental loss — or perhaps because of it. …
“Religion was how you lived that life you’d been randomly given,” Anand wrote of Crowley’s beliefs. “It was, he believed, about choosing to do things that are good, even when life delivers the worst.”
Anand said she remains friends with the Crowleys and planned to stay with them in New Jersey when she, her husband, Greg Kroitzsh, and their children came from India for the movie’s New York premiere.
The film is classified A-III — adults — by the U.S. bishops’ Office for Film & Broadcasting. It is rated PG — parental guidance suggested — by the Motion Picture Association of America.
Anand said she is pleased that her daughters — Aleka, 9, and Tatyana, 12 — are friends with Megan, 13; Patrick, 11; and their 15-year-old brother, John Jr., who does not have Pompe disease.
“It’s good for them to be friends with kids who are profoundly disabled,” Anand said. “They see how bright their personalities are. Megan made it cool to be in a wheelchair. It’s been an invaluable experience.”
The making of the film has been “a wonderful and exciting distraction” for Megan and Patrick Crowley, who remain in wheelchairs and on ventilators, Anand said.
“It’s made them feel their lives have resonated with others,” she said. “It’s made them feel loved and supported.”
Anand, who had not seen the movie at the time of the interview, had read the screenplay and found that although there were differences, “it stuck to the spirit of the story.”
“I thought it was heroic of them not to make a real Hollywood ending,” she said.