Defying the Odds – The Crowleys, from left; Megan, Aileen, John, John Jr. and Patrick, today live a joyful life in Princeton. Megan and Patrick, both diagnosed at an early age with the rare, often-fatal Pompe Disease, have survived thanks to John’s work in developing a treatment for their illness. Brian Doben photo/courtesy of Newmarket Press
Defying the Odds – The Crowleys, from left; Megan, Aileen, John, John Jr. and Patrick, today live a joyful life in Princeton. Megan and Patrick, both diagnosed at an early age with the rare, often-fatal Pompe Disease, have survived thanks to John’s work in developing a treatment for their illness. Brian Doben photo/courtesy of Newmarket Press

John Crowley’s life story reads like the perfect Hollywood script – a devoted husband and father risks everything for his family, eventually overcoming the odds and saving the lives of his children.

This dramatic tale, however, is also filled with many inspirational life lessons that are often lost in today’s big budget, special effects laden blockbusters. But Crowley – whose real life experiences became the basis for this year’s big screen feature “Extraordinary Measures” and the new book "Chasing Miracles: The Crowley Family Journey of Strength, Hope and Joy" (Newmarket Press, $22.95) – knows firsthand how powerful film can be in telling stories that convey a positive message.

Crowley will speak on his family’s journey and the Hollywood adaptation of their life at the Diocese of Trenton’s inaugural Re: Image Film Festival April 24 in Asbury Park’s historic Paramount Theater. The day-long event, which will feature short films focusing on the triumph of the human spirit, promises to be a refreshing change of pace from the type of programming seen in today’s society, Crowley said.

“So often in the media, when you turn on the news, when you watch TV, when you go to the movies, it focuses on the difficult parts of life. It focuses on themes that don’t really relate to how most families try to live their life,” Crowley explained in an interview with The Monitor.

“I think that to bring people together who have a different vision of life, who have a different sense of optimism, who have a different respect for family and for life for all the activities that make it special… and to be able to use film as a medium for all of those themes coming together is just terrific.”

An Incredible Story
It didn’t take a lot of effort to turn the story of the Crowley family into a compelling screenplay.

The family’s saga began in 1998 when John, a native of Englewood, N.J., and a graduate of Bergen Catholic High School, and wife Aileen received the tragic news that daughter Megan, at the time just 15 months old, and newborn son Patrick were both diagnosed with a rare and often fatal form of muscular dystrophy called Pompe Disease. Although their older son, John Jr., did not suffer from the genetic disorder, the prognosis for the two younger Crowley children was grim.

But the Crowleys weren’t content to sit back and watch the disease destroy their family. They began studying the disorder, only to learn that research and advances on such a rare condition were progressing very slowly. So John, who held a law degree from the University of Notre Dame and an MBA from Harvard, gave up his corporate job and founded his own biotech company focused exclusively on developing a treatment for Pompe.

It was a big gamble, but it paid off. A treatment was developed by Crowley’s company that saved his children’s lives. Today, the family lives in Princeton, where all three Crowley children attend the same public school while John continues to work on advances in Pompe treatments in his role as president and CEO of Amicus Therapeutics in Cranbury.

“The kids are happy and they are reasonably healthy, and we’ll keep working on potentially newer and better medicines in the years to come,” Crowley said. “Megan is now thinking about high school, which is unbelievable for a little kid who wasn’t supposed to be but a couple of years old.

“And even though they are in a wheelchair and are physically very handicapped, she and Patrick are just amazingly strong in their character.”

Hollywood Comes Calling
Journalist Geeta Anand began to chronicle the Crowley family’s amazing story, which made its way to the front page of the Wall Street Journal. The article caught the attention of Harrison Ford,  who saw the potential of bringing the inspirational tale to the big screen.

Soon after, the Crowleys found themselves in the middle of the movie-making process.

“They were incredibly careful to include us every step of the way,” Crowley said. “The screenwriter came out to New Jersey from Los Angeles and lived with our family for a couple of days to get a sense of our family dynamic. He came out to my company and spent a couple of days with me in the labs watching our scientists and watching our business meetings to kind of get a feel for it all… I even had my scientists out on the set setting up the labs and making sure all the equipment was right.”

There was also an understanding that the film would not be entirely factual, he added. Instead, stars Brendan Fraser and Keri Russell would play Hollywood versions of John and Aileen Crowley, while Ford would play a fictional scientist based on some of the researchers the real-life Crowley had worked with.

“They were also careful to make sure that we understood this isn’t a made-for-TV movie, this is not a docu-drama in any way. It is a major motion picture inspired by our life and they do take dramatic license,” Crowley explained. “But whatever they did, they would always ask us, ‘Would it be okay instead of showing you here, if we had you there? Would that keep to the spirit?’

“So for us it was a very, very positive experience.”

John Crowley recounts his family's struggles and their power to overcome adversity in the new memoir  The movie hit theaters last January and is scheduled to be released on DVD May 18, which Crowley said is an opportunity for the film to reach an even wider audience.

“The film touched a lot of people in a lot of different ways, and I think it is a film that will continue to live on,” he said.

In addition to the film, Crowley also decided to collect his own account of the family's journey in "Chasing Miracles," which was released to coincide with the film’s premiere. The book, he explained, shares many of the personal stories that he and Aileen have told at speaking engagements and gives an inside look at their family's life that people from all walks of life can relate to.

“I think it is (filled with) things that you don’t need to be a special needs parent to appreciate,” he said. “They are good lessons in life.”

Relying on Faith
Through his life’s struggles, Crowley said that his strong Catholic faith has always helped to keep things in perspective.

It began during his childhood, when Crowley’s father, a police officer, was killed in the line of duty. John, then seven years old, recalls it as the point when he began building his lifelong bond with the Church.

“I think particularly after my dad died, we became increasingly more devout,” he said. “I was an altar boy and I went to a Catholic high school, and there were a lot of great people (in the Church) who influenced us.”

But Crowley admits that his family, now parishioners of St. Paul Parish, Princeton, still questioned their faith at times during the struggle to find a cure for Megan and Patrick.

“It is that classic question that has dogged mankind forever – how could a God that is all-powerful and all-merciful allow evil and hurt in the world, including little kids that suffer from diseases?” he said.

But faith has led the Crowleys to understand that suffering and disease are a natural part of the world and what has happened to their children was not a punishment from God. They have also come to realize that God provides the strength to overcome those challenges that occur in everyone’s lives.

“I think ultimately it is how you respond to it with the gifts and the grace that God gives you that makes life special,” Crowley explained.

“And when we pray, we pray for a lot of things, but more than anything we give thanks and we pray for strength and grace to continue on and enjoy each day, because some day, it will be your last. And I think the measure of your life is how you live those days in between.”