Disease kills by inches.
For years, John and Aileen Crowley have watched Pompe disease—a rare genetic disorder—whittle at their children, piece by piece. Megan, a feisty 8-year-old with a fondness for bowling and a passion for pink, is wheelchair bound, too weak to walk, stand or even hold her head up without help. Her younger brother, Patrick, is worse—too weak, even, to flick a piece of bread into a duck-filled lake. Day by day, their internal organs swell, their muscles weaken. Megan, the doctors say, will die before she turns 10. Patrick, sooner.
The Crowleys know the grim realities, but they haven’t given up hope. Life, after all, is always precious, but no more so than when it’s short. Through countless nights researching, John becomes a layman expert on the disease, and he sees one name pop up again and again: Dr. Robert Stonehill. Stonehill is ahead of the pack in terms of Pompe research, and so, in a desperate attempt to save his children, John flies to Nebraska to talk with him. Turns out, Stonehill’s an eccentric old coot with the social graces of an earwig. And, while he may be brilliant, his work is far from the stage at which it can help anyone.
“Spend time with your kids,” Stonehill tells John. “Enjoy them while they’re still here.”
John won’t take wait for answer. And when he comes to understand that Stonehill needs more money to push his research into high gear, he and Aileen manage to raise $91,000 to help. That’s when Stonehill proposes that he and John launch their own bioresearch company dedicated to finding an effective treatment for Pompe.
The catch? The plan would require John to quit his job and lose his health insurance—a big deal, considering the medical expenses the children rack up. John would have to move to Nebraska, spending what little time he might have left with his children immersed in an attempt to give them more of it.
It’s not an easy choice. But for John, it’s an obvious one. “I’m chasing the wind,” John admits. “But I can’t just sit around and wait for my kids to die.”
Extraordinary Measures is based on the real Pompe-related health care odyssey of the Crowley family. The film, of course, takes liberties with their story, but it also does justice to the sacrifices they made for their children.
“I think as a dad, I did what I had to do,” the real John Crowley says in a clip on the film’s website. “I don’t think that makes you a hero.”
Onscreen, John puts everything on the line—his career, his financial security, his friendships. And he works tirelessly on his kids’ behalf, without a single thought for himself.
Any parent who watches the Crowleys’ daily struggle to raise and watch over their very sick children will feel a measure of their anguish, stress and anxiety. But the Crowleys rarely betray that stress to their children. They read them stories at night. They take them bowling. (Megan uses a special ramp to launch the ball.) They take them to the beach. And they help them play carnival games at a local boardwalk. They try to normalize their children’s lives as much as possible—and if that means Megan gets scolded for putting off bedtime or yelled at for trying to run over her older (and healthy) brother with her wheelchair, well, so be it. Megan and Patrick are loved, not coddled.
Dr. Stonehill works some pretty severe hours to make his Pompe-busting enzyme work, but he shows a willingness to step aside when another scientist’s project looks more promising. He refuses to cash his first paycheck until he feels he’s earned it. And while the scientist is as ornery and thin-skinned as they come, he develops a certain affection for John and his family.
Megan and Patrick’s older brother sells his prized RipStik (a two-wheeled skateboard) and donates the money to help Megan and Patrick. A friend hands John an envelope full of checks, noting, “This is from my relatives, friends and church group.”
We’re not given a clear sense of where the Crowleys are coming from, spiritually speaking. But when Megan nearly dies from some sort of respiratory crisis, John admits that he prayed.
“I prayed that if it was her time, she would go quickly,” John says. “But morning came, and she pulled through.”
The word miracle is bandied about at times, and the film’s trailer is emblazoned with the line, “Don’t hope for a miracle, make one.”
John and Aileen engage in a late-night interlude. (We see Aileen loosening John’s tie.) The next morning, a nurse walks into the Crowley house and discovers the partly clothed pair on the couch. Aileen, in a negligee, introduces John to the nurse as her husband as John hurriedly tries to pull on his pants. “Glad to hear it,” the nurse says.
A security guard points a gun at an intruder. Frustrated, Stonehill throws binders and piles of paper. John injures his hand on a window ledge. (He washes the bleeding wound in a sink.)
About a dozen s-words. Sporadically used, a collection of other curse words includes “h‑‑‑,” “d‑‑n,” “a‑‑hole” and “b‑‑ch.” God’s name is misused eight or 10 times; it’s paired with “d‑‑n” once. Jesus’ name is abused a half-dozen times.
The film obviously revolves around drug use—but in this case, in a positive sense. Children who are given the new treatment receive something like a sugar buzz as their bodies process the enzyme.
We see Stonehill with a lit cigarette in his hand and an open bottle of beer on a nearby table. He and John meet to talk in a bar. Glasses of wine are seen at a dinner get-together.
In a moment of desperation, John sneaks into a biotech lab, swipes Stonehill’s security card and tries to steal a vial of medicine. Again in desperation, Stonehill and John set up a “sibling study” at a nearby hospital without the approval or immediate knowledge of the biotech firm both of them work for. (The study, which would allow John’s kids to get treatment, goes against the ethics policies of the company.)
It’s hard to get too down on a film like Extraordinary Measures, filled as it is with cute, sick kids, loving parents, high-minded scientists and whatnot. Leaving the theater after an advance screening for the press, one reviewer leaned over to me and said, “Dinging this film would feel like beating up puppies.”
So let me get my dings out of the way and then quickly move on.
Extraordinary Measures doesn’t have an extraordinary level of negative content attached to it, but I was surprised at the number of s-words I heard. It’s more crass than I expected, and more crass than it needs to be. And, despite some nice performances by Harrison Ford, Brendan Fraser and an underutilized Keri Russell, I left the film dry-eyed. Its story is interesting and engaging, but not quite gripping and engrossing.
Still, while most parents don’t have to endure the sorts of trials the Crowleys were called on to face, it’s good for all of us to be reminded of what can happen—for good—when someone does have to confront something this crushing.
It’s sometimes easier to keep that sense of sacrifice in mind when your kids are fighting a deadly disease than when they’re getting D’s on their algebra tests or missing curfew or getting their noses pierced without permission. Extraordinary Measures is a good reminder that, even in the midst of more mundane familial stress, our children are extraordinary—blessings from above. We gave them their lives, and we should give them ours.
There’s a scene in the film—mirroring, apparently, real life—in which Megan stares into her father’s eyes from her hospital bed. She’s just suffered a massive health scare—one she almost didn’t survive—but her eyes don’t hold any sense of self-pity or suffering or even submission. They hold fire. They hold a desire to live. Those eyes spurred the fictional John Crowley on to Nebraska, and the real John Crowley to a searing medical journey.
“I think they told us that she didn’t want to quit,” the real John Crowley said, remembering the moment. “That she wanted to fight. And I think from that moment on we both knew she wanted to fight, so we would, too.”
Every parent should understand the feeling of looking into their children’s eyes and knowing, down in their core, that they’d do anything to keep them safe and healthy and, if possible, happy. Anything.
Read Plugged In’s interview ( Measuring Movie Miracles) with Brendan Fraser and John Crowley.
Paul Asay has been part of the Plugged In staff since 2007, watching and reviewing roughly 15 quintillion movies and television shows. He’s written for a number of other publications, too, including Time, The Washington Post and Christianity Today. The author of several books, Paul loves to find spirituality in unexpected places, including popular entertainment, and he loves all things superhero. His vices include James Bond films, Mountain Dew and terrible B-grade movies. He’s married, has two children and a neurotic dog, runs marathons on occasion and hopes to someday own his own tuxedo. Feel free to follow him on Twitter @AsayPaul.
