Shamberg's adaptation of the book resulted in "Extraordinary Measures," which was released Jan. 22.
According to Anand, a Pulitzer Prize-winning reporter for The Wall Street Journal, the book evolved out of two articles she wrote in 2001 and 2003, during her time on the publication's biotechnology beat. In purchasing the rights, Ford and Shamberg satisfied their desire to produce a medical drama, Anand said.
"I hadn't even finished the book. I was still writing it when they were interested and bought the rights to the book," Anand said in an interview with The Dartmouth. "I began to send the screenwriter chapter by chapter as I wrote the book."
The book and film, are both about John Crowley, whose two youngest children, Megan and Patrick, were diagnosed as infants with Pompe Disease in 1998, a rare and fatal disorder in which a lack of the enzyme that breaks down glycogen disables the heart and other muscles. At the time, there was no protocol for the treatment of Pompe Disease.
Unwilling to accept the lack of treatment, Crowley who had just graduated from Harvard Business School quit his job to invest his time and life savings in a biotechnology start-up company called Novazyme Pharmaceuticals Inc., determined to find a scientist who could develop a replacement enzyme to keep his children alive.
Novazyme soon sold to Genzyme Corp. for over $100 million. Even though the research was successful, Crowley's role as an executive of Genzyme caused a conflict of interest that prevented his children from participating in the first critical trial. This conflict of interest was the topic of inquiry for Anand's 2003 articles.
"Extraordinary Measures" is the first feature-film by CBS Films, the company's new movie subsidiary founded in 2007. Directed by Tom Vaughan (best known for 2006's "Starter for 10") and written by Robert Nelson Jacobs (2000's "Chocolat"), the film stars Ford, Brendan Fraser and Keri Russell. Fraser and Russell play John and Aileen Crowley, while Ford plays the primary scientist.
Originally, Ford wanted to play the father, but Anand said she and other collaborators believed that Ford, now 67, was too old Crowley was 30 years old when he began his work developing a treatment for the disease. Ford settled on playing a scientist instead, according to Anand. The Dr. Robert Stonehill seen in the movie is largely a fictitious embellishment of Bill Canfield, the real scientist who worked with Crowley.
According to Anand, the biggest difference between Canfield and Stonehill is that Crowley and Canfield's tumultuous real-life relationship did not end happily. The film, however, provides a satisfying ending for audiences in which the scientist reconciles with Crowley. This is reflective of the film's decision to allow the two men's relationship to take center stage a decision that makes perfect sense considering Ford's massive star power. "The movie ended up focusing on the relationship of these two men. In my book it is the family relationship and John and Aileen, the mom and the dad, that is the primary [focus,]" Anand said.
Even with such changes, however, Anand said she believes the film speaks to the overall "spirit" of the story. The dedication, which begins "For the Crowleys, who taught me how to live," embodies that spirit, she said.
"Seeing what [the Crowleys] went through and how joyfully they live their life has made me appreciate not only how lucky we are to be healthy in our family but also taught me how much we are missing by not living each day and each moment fully," Anand said.
Anand, who has kept in touch with the family since writing the first article, last saw Megan and Patrick at the New York City premiere, as they were unable to attend the one in Los Angeles due to the health risks involved in traveling.
"Megan was dancing in her wheel chair with her dad and with Brendan Fraser," Anand said.
Both Anand and the film recognize that Megan and Patrick will never be cured of their illness. The treatment, which has been on the market since 2006, helps the patient's heart but does not effectively treat muscle injury. Thus Megan and Patrick will likely always remain in wheelchairs and need assistance breathing, but the medicine has helped to sustain their lives.
"They still lead very full lives in public school in Princeton [N.J.] with lots of friends having sleepovers and play dates and birthday parties," Anand said.
Crowley is still working to improve treatments for Pompe and related disorders in hopes of helping his children further. He has recently written a book "Chasing Miracles," which Anand described as a compilation of "his thoughts on life."
