Her struggle with ‘Extraordinary Measures’ disease

Alicia Blackington is a rare individual. That hasn’t always been a blessing. For years, the Coronado native suffered from mysterious ailments that left her with weak limbs and breathless lungs. Twice, she was hospitalized and put on life support. Once, doctors told loved ones that she was on the brink of death. Always, her condition baffled the experts. Finally, she was diagnosed with Pompe disease, a gradual and often fatal weakening of the muscles controlling movement and breathing. So far, so bad. But she caught a break. “Don’t worry,” said a doctor at the Mayo Clinic in Minnesota. “There is a treatment coming up in the world.” That treatment, and the breathtaking road to its discovery, is the subject of “Extraordinary Measures,” the Harrison Ford movie that opened Friday. In the film, John Crowley (Brendan Fraser) frantically seeks a cure to the disease that is killing two of his children. This ailment is so rare, pharmaceutical companies were not pursuing a treatment. Refusing to accept defeat, Crowley stakes everything on a bold move. The Harvard Business School graduate quits his job, raises more than $100 million, takes over a biotech company and hires a maverick doctor (Ford) to stop this killer. On the film and in life, they devised a medication — and an adult version of this drug, Myozyme, has helped to save Blackington’s life. Read the entire Union Tribune story here.