An Innisfail teenager and his family plan to be first in line when Harrison Ford’s new movie opens later this month.

Trevor Paré, 19, is alive today because of an American father’s heroic push to find a treatment for Pompe disease, a rare genetic disorder that was slowly killing his two youngest children.

Extraordinary Measures describes how Megan and Patrick Crowley’s father, John, tracked down and subsequently recruited Nebraska University researcher Robert Stonehill to develop a drug that would help alleviate symptoms of the disease.

Harrison Ford is executive producer of the movie, in which he plays the role of Stonehill with Brendan Fraser as Crowley.

Paré first learned about Crowley and his work with Pompe disease about seven years ago while searching the Internet, using one of the new computers given to him and his mom, Linda by the Children’s Wish Foundation.

Crowley’s children were diagnosed just days apart in 1998, shortly after the youngest was born, said Linda while having coffee in Innisfail after watching the torch relay on Saturday morning.

Some people can live with Pompe for years. But the outlook is especially grim when the disease shows up in infants and young children.

Oddly enough, people who have known Trevor for years have not made the connection between him and the movie, she said.

Trevor was three months old and appeared healthy when Linda and her husband, Andy adopted him.

She sought medical advice when he showed unusual symptoms and was not developing normally. The doctor who finally determined that Trevor had Pompe disease said all she and Andy could do was love him and wait for him to die.

Linda and Trevor had nothing to lose when they got in touch with Crowley, seeking more information about Myozyme therapy.

Trevor was accepted in the clinical trial, starting in January of 2004 on the therapy which Linda said saved his life. She believes that, had Trevor been three years younger when he first started the therapy, he would still be walking today.

While ongoing enzyme therapy had arrested the disease, Trevor’s fight was not. Because of the rarity of Pompe disease, named for the doctor who first identified it, the therapy is prohibitively expensive.

Costs for treating Trevor had reached $700,000 a year in March of 2008 as the clinical trial neared its end. Alberta Health was not prepared to pick up those costs afterward.

Trevor and Linda launched a very public campaign, making their case with the media and begging the provincial government for help on behalf of all people who suffer from rare diseases that require expensive treatments.

Then Health Minister Ron Liepert made two unescorted visits to their Innisfail home to talk about the problem, said Linda.

Trevor never asked for help for himself. He asked for help for everyone in his predicament, she said.

The family was away on Mother’s Day in 2008 when Liepert hand-delivered an envelope containing unbelievably good news. The province had found a way to fund drug programs for people with Pompe disease and other rare diseases.

It was public awareness, made possible through the media, that helped push for that change, said Linda.

Now, she and Trevor hope that Harrison Ford’s new movie will add to that push by making more people aware of Pompe disease and of the uphill battle faced by people struggling to find treatments and even cures for rare diseases.

bkossowan@reddeeradvocate.com