Health & Parenting

Harrison Ford's Extraordinary Measures

In the new film Extraordinary Measures, Harrison Ford does what he does best. The veteran actor brings to life another curmudgeonly character who, once his prickly exterior is stripped away, is revealed to be a hero.

Ford, still strapping at 67, isn't battling intergalactic bad guys, indigenous warriors, or even his own demons this go-around. His current alter ego, the cranky but brilliant scientist Robert Stonehill, is at war with a rare genetic disorder called Pompe (pronounced pom-pay) disease.

This debilitating condition affects about one in 40,000 people worldwide, many of them infants and young children, in the cruelest of ways. It leads to severe muscle weakness, rendering its young patients weak, wheelchair-bound, and fighting for breath, with enlarged hearts and livers. Pompe disease is a certain death sentence without treatment, which, until recently, didn't exist.

Cut to our action hero -- or, in this case, maybe it's more accurate to say action heroes -- to save the day.

The Crowley Family Story

The movie, which opens nationwide on Jan. 22, is inspired by the remarkable true tale of John and Aileen Crowley and their three children. The two youngest -- Megan and Patrick -- were diagnosed with Pompe disease in 1998 at ages 15 months and 5 months, respectively. With both Crowleys unknowingly carrying a copy of the recessive Pompe mutated gene, the couple had a 25% chance of conceiving a child with the condition and a 50% chance the child would become a carrier. But it took Megan falling behind developmentally before she -- and the entire family -- was tested.

These desperate parents were willing to do anything to save their sick kids, even if that meant John Crowley's quitting a job with good health insurance to raise funds for experimental research, and then launching his own biotech firm to test a promising new Pompe therapy. Ford's character is a composite based on several actual scientists with groundbreaking ideas; in the film he becomes, as Ford puts it, the unlikely "foil and partner" to one very determined dad.

"John sought out and reviewed all the available information about the disease," Ford tells WebMD from his office at the small, relatively sleepy Santa Monica Airport. "He decided that [backing one researcher's work] was his best shot to bring a drug quickly to the marketplace … but he found out there were many, many obstacles before he could do so."

Searching for a Pompe Disease Cure

The real-life John Crowley has garnered ample media attention for the extraordinary measures he took to cheat death. TheWall Street Journal reporter Geeta Anand chronicled his mission in a 2003 article she later expanded into the book, The Cure: How a Father Raised $100 Million -- and Bucked the Medical Establishment -- in a Quest to Save His Children.