Trevor Pare, 19, suffers from Pompe disease. (CBC) An Alberta teen suffering from debilitating Pompe disease is hopeful that with the proper treatment his life will have a happy ending, similar to that of the Hollywood movie Extraordinary Measures.
"My dream is to become a sports broadcaster," said Trevor Pare, 19, of Innisfail. "I've always loved sports [and] watching sports. That's my career goal."
Pompe disease affects about one in every 40,000 births. There are only about 30 people in Canada who suffer from the disease.
Extraordinary Measures, which opened Friday tells the story of the search for a drug to help the symptoms of Pompe disease. The ailment causes glycogen to build up and damage the heart and other muscles until a patient can no longer breathe and dies.
Myozyme is the drug developed for Pompe sufferers.
"The drug has saved my life," said Pare. "It's a miracle drug."
The drug is effective but expensive, costing about $500,000 a year per patient.
Ontario and Alberta are the only provinces where health insurance plans cover the cost.
Linda Pare, Trevor's mother, lobbied to get Alberta to cover the treatment and says all provinces should follow suit.
"Unless they get on Myozyme, their life will deteriorate," she said. "In the end, it will cost the province more because these people will end up in the hospital."
Pompe dramatized
The movie Extraordinary Measures is based on a Wall Street Journal article and book, The Cure: How a Father Raised $100 Million — and Bucked the Medical Establishment — in a Quest to Save His Children, by Pulitzer Prize-winning reporter Geeta Anand.
It is the story of John Crowley, who, in the late 1990s, discovered two of his three children had the debilitating disease.
Crowley quit his management-consulting job to take work with a pharmaceutical giant in order to learn more about possible cures. The Crowleys moved from San Francisco to New Jersey to be closer to specialists who knew more about Pompe disease.
In 2000, Crowley left his job at the bigger company to head Novazyme Pharmaceuticals Inc., a tiny biotech firm that had a promising therapeutic approach for the disorder.
Harrison Ford plays the maverick scientist who develops a potential cure.
In the end, Novazyme created Myozyme.
