Extraordinary Measures

By Elise Nakhnikian

“When I look back on those five years that inspired this film, never once did I sit back in a chair late at night with a glass of wine or a beer and think, ‘Wow, this will make an amazing film,’” says Princeton resident John Crowley with a laugh. “I was just trying to get through the next day and not get fired.”

Crowley is talking about Extraordinary Measures, Hollywood’s version of the amazing journey on which he led his family after two of his three children, Megan and Patrick, were diagnosed with a rare illness in 1998. A genetic disorder in which deficient enzyme causes glycogen to build up in the body, Pompe disease weakens and eventually paralyzes muscles throughout the body, including the heart. When the children were diagnosed, there was no treatment for the disease, and the longest anyone had lived with it was to age eight or nine.

Crowley refused to accept that death sentence. He quit the job that supported his family, leaving behind the health insurance that paid for hundreds of thousands in medical care for his kids every year, to start a biotech company to develop a replacement enzyme. Raising millions of dollars, he mobilized dozens of scientists in a desperate race against time. And he succeeded, developing a treatment that halts the progression of the disease.

“The enzyme that we helped to discover, which they’ve taken now for seven years, every other week, reversed the damage done to their hearts by the disease, and that’s given them enormous quality of life, and hopefully great quantity,” he says of his kids. But the treatment has reversed all the damage it can and is now just keeping the disease from getting any worse. "We don’t talk any more about how long they’re going to live – we don’t know,” Crowley says. “We try to live each day at a time.”

All three of the Crowley kids go to public school in Princeton. Patrick is in 6th grade, Megan in 7th, and their older brother John in 8th “They’re incredibly smart,” says their father. “Megan’s a straight A student. And they’re happy, more than anything.”

The love Crowley and his wife Aileen feel for their kids and the extent to which they have managed to give them a joyful, active, normal family life is the most moving part of the movie – and, Crowley says, the most accurate.

“It’s not a docudrama,” he says. “It’s entertainment. It is inspired by true events, but it’s not a day-to-day accounting of our lives. But it captures 100% of our family’s spirit and dynamics. Virtually every event portrayed with respect to our family is completely accurate, even down to to the medical equipment, the environments we lived in, and the things that happened.

“Other things were changed. The goals is, how do you, in an hour and 45 minutes, tell a fairly complex story in a way that people can enjoy it and understand it? It took me a while to understand that. You’ve got to composite characters. You’ve got to condense timelines – that’s about 5 or 6 years of work condensed to 18 months.

The biggest change made to the Crowley’s story may have been the addition of Dr. Robert Stonehill, the character played by Harrison Ford. It was Ford who got the movie made, approaching a producer after reading a 2003 Wall Street Journal article about the Crowleys, and Stonehill feels like the kind of character you might invent to massage the ego of an aging movie star.

The most brilliant of the scientists Crowell consults, a cranky, craggy loner in blue jeans and cowboy boots who’s forever blasting classic rock, Stonehill is like one of the characters Clint Eastwood’s been playing lately, a crusty old coot with a heart as gooey as a ripe camembert. The way he manages to always be at the center of the action, sulking as John Crowley cuts him out of a research team or smiling as the kids get their first transfusion, feels tiresomely formulaic too.

But on the whole, Extraordinary Measures is as engaging as its subjects, a briskly paced, emotionally gripping story with an upbeat vibe. Brendan Fraser plays John Crowley, and though he’s looking a little bloated and bug-eyed these days, his natural charm and lightness of spirit comes through, along with a warmth and solidity that feel right for the part. Keri Russell is equally solid as Aileen Crowley, who manages a house full of wheelchairs, ventilators, and home care workers without ever letting it feel like a hospital ward. And Meredith Droeger is a pistol as Megan, apparently channeling the real Megan’s quick tongue and dry sense of humor.

“Megan has a T shirt that says Local Celebrity,” Crowley says. “I told her, pretty soon she can take the ‘Local’ off of it.

“We’ve always tried to be pretty selective about who we talk to and when we talk to them in the media,” he adds. “It’s a balancing act. You want to get the word out to help your family and other people’s families, but you also want to keep up some measure of privacy. Though I think that may have been effectively blown in the last few weeks. When they portray your love life in a movie – and then they gave it a PG rating! Man, I could at least get a PG-13.”

Crowley is currently president and CEO of Amicus Therapeutics in Cranbury, which is looking for a next-generation treatment for Pompe disease, pills that could boost the power of the defective enzymes. But he’s had to take more time off than usual this month, promoting not only the movie but the book he cowrote about his family’s journey.

Chasing Miracles, which Crowley calls “an inspirational memoir,” tells the family’s story through its own eyes, “What we think, our perspective, what we’ve learned,” says Crowley. “It’s as much through our children’s eyes as anybody’s. We’ve learned more about life and love from our kids than we’ve ever taught them.”