A new Harrison Ford movie hits close to home for an Alberta teen

Trevor ParéExtraordinary Measures, now in theatres, tells the true story of a father’s quest to find a researcher who could develop a treatment for Pompe disease, a rare neuromuscular genetic condition afflicting his two youngest children.

Trevor Paré of Innisfail, who has the disease, says he has eagerly anticipated the film’s release.

“Definitely!” he says. “(My friends and family) will probably fill the theatre.”

In many respects, the 19-year-old is a typical teenager who loves hockey and spends hours surfing the Internet. But Trevor is one of only about 15 people in Canada diagnosed with Pompe disease, which causes progressive muscle weakness and can strike at any age.

Trevor knows the real-life family portrayed in Extraordinary Measures; in fact, patriarch John Crowley introduced Trevor and his family to the treatment that arrests progression of the disease.

Trevor’s story is as dramatic as any Hollywood movie.

He was adopted at three and a half months of age.

“I knew something was wrong pretty much right away,” says Linda Paré, Trevor’s mother. “He just didn’t feel right in my arms.”

Since Pompe (pronounced pom-pay) disease is extremely rare, it took nearly seven months for a diagnosis.

Once Linda learned of her son’s condition, she started searching online to learn everything she could about Pompe disease.

She learned about the Crowley family’s search for a researcher, who would eventually develop Myozyme, a drug that replaces missing enzymes and helps build muscle strength. (Ford plays researcher Dr. Robert Stonehill in the movie.) The Crowley and Paré families met in Wichita, Kan., at a 1998 conference for people with rare diseases.

Linda says the treatment saved her son’s life.

Trevor’s Myozyme treatment began in early 2004 at the Alberta Children’s Hospital (ACH) in Calgary. He needs nine-hour long infusions twice a month.

“I started feeling better almost instantly after receiving my first Myozyme treatment,” says Trevor. “It was such a good feeling.”

He remains in a wheelchair but is now able to receive his treatments in Red Deer.

In late 2009, staff at the Red Deer Regional Hospital received Myozyme training from their ACH counterparts, allowing Trevor to have his treatment closer to home

“It was such a huge relief,” says Linda. “A little nerve-racking to leave what had become our family at the Children’s Hospital but we are so thrilled with the staff here in Red Deer.”

She hopes the movie will raise awareness of Pompe disease as well as the struggle, setbacks and achievements families dealing with rare diseases encounter.

Linda and Trevor are founding members of the Canadian Pompe Association. To learn more about their story, visit www.pompecanada.com

Tagged: Extraordinary Measures, living with Pompe