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A father’s quest

Jenn Metz | Thursday, January 14, 2010

“How could you not?”

John Crowley is very clear about one thing: though deemed “extraordinary,” his measures to save his children were what any other parent would do.

After his two youngest children — Megan, 13, and Patrick, 11 — were diagnosed with a rare and often fatal genetic disease, Crowley left his secure job in the hopes of developing a treatment — and a cure.

Megan and Patrick suffer from Pompe Disease, caused by mutations to the gene that makes the enzyme needing to break down glycogen, a stored form of sugar. The excessive amounts of glycogen accumulate in the body and disable the heart and skeletal muscles. The Crowley’s eldest son, John, 15, does not have the disease.

For Megan and Patrick, that meant wheelchairs, trouble breathing and talking clearly, and weakened muscles. For Crowley, the prognosis of the life-threatening condition meant taking the lead in the quest for the cure.

A biotech firm CEO and 1992 Notre Dame Law School alumnus, Crowley returns to the University campus along with his wife, Aileen, tonight for a preview screening of the film “Extraordinary Measures” (CBS Films), based on the book by Geeta Anand, a Pulitzer Prize-winning Wall Street Journal reporter, that chronicles his family’s story.

“I hate to call it a story, it’s our life, just life,” he said.

A New Jersey native and the son of a police officer, Crowley said he never spent much time with “Hollywood people,” and he and his wife were “apprehensive and a bit skeptical” when the studio and producers approached the family about telling their story on the big screen.

“It took the better part of a year for Aileen and I to be comfortable with basically signing our life rights away to a studio to make a film about our family,” he said. “This is largely how the world is going to know us and we wanted to make sure that it was done the right way by the right people.”

The right people, including actor Harrison Ford, have helped the Crowley family to “share with the world a lot of the strength and hope and inspiration that we’ve learned from so many people,” Crowley said, “but more than anybody, through our kids.”

After receiving biweekly treatment, Megan and Patrick are doing much better. Their hearts, once enlarged to twice or three times the normal size, are now normal-sized.

“They’re still special kids. They’re still in wheelchairs,” he said, but he wanted to make sure that characteristic is not the only one to define his kids, who attend public schools in Princeton, N.J.

“They’re happy, they’re smart … that’s just another testament to their strength,” he said. “They just want to be treated like every other kid.”

Talking about his children, Crowley’s voice changes — it’s more fast-paced, more excited, and you can tell he’s smiling.

All three of them are different, he said, and their reaction to the film reflects their personalities.

John, a “quiet and reserved kid,” was anxious at first, while Patrick was “wholly ambivalent — he just wanted to know when his friends could come over and when we could play Playstation,” Crowley said.

Megan, the “precocious” straight-A student, is so excited about the film that she’s been shopping for her dress for a couple of months now. She even wore a “Local Celebrity” T-shirt to school.

Her father told her that the “local” is no longer necessary.

“They’re going to be proxies for hundreds of thousands of kids in wheelchairs, and this is how people are going to know about special needs. Yes, they have special needs, but also remarkably special gifts,” he said.

Crowley, who is portrayed by actor Brendan Fraser in the film, is focused on the work that is yet to be done.

“I think one of the lessons for us is the importance of innovation and a lot of people, including myself and others, need to keep working to drive science to the next best treatment that’s ultimately a cure for the disease,” Crowley said.

The ultimate goal of the film is “much more broad” than just focusing attention on Pompe disease, he said.

“There are 7,000 rare diseases that together affect more than 30 million people just in the United States, and I think this film will inspire people to try and solve these problems,” he said.

Some of those working hardest to fight for cures work here at Notre Dame, including Dr. Kasturi Haldar, director of the University’s Center for Rare and Neglected Diseases.

Featured in one of Notre Dame’s “What Would You Fight For?” television ads on NBC, the Center is especially concerned with rare neuromuscular disorders such as Neimann-Pick Type C and rare forms of cancer along with neglected diseases like malaria and tuberculosis.

Crowley described the current research environment as the “Golden Age” of medicine, pointing to Haldar as a leader in the future of experimental medicine and treatment.

Crowley and Haldar will be teaming up to introduce tonight’s 6:30 p.m. special pre-release screening of “Extraordinary Measures” in the Browning Cinema of the DeBartolo Performing Arts Center. A second screening will follow at 9:30 p.m.

Crowley said his family didn’t want the film to be melodramatic.

“I didn’t want it to manipulate the subject matter, because it’s an easy subject to do that if you want to,” he said.

Though there will be some emotional scenes, Crowley promised the audience will laugh a lot more than cry.

The film’s themes will particularly touch the Notre Dame community, Crowley said.
“In the sense of faith and commitment and service that make Notre Dame so unique … if there’s one community that can relate to [the message of the film], I think it’s the Notre Dame family.”

All being said, he’s happy with the film that is inspired by his urgent search for a cure for Pompe.

“We didn’t change the world, we just changed our tiny little piece of it,” he said.