Family came for son’s treatment, found a city to love

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This article was published 28/05/2012 (4897 days ago), so information in it may no longer be current.

A family from France credits the Children’s Hospital in Winnipeg with saving their young son’s life two years ago.

Now, they’re calling the Manitoba capital home.

The Ferrer family came to Winnipeg for seven months in 2010 so their oldest son, Julien, now 9, could receive a new drug to combat hypophosphatasia, a rare bone disease that can sometimes be fatal.

The trial was successful, and now Julien — still about the size of his four-year-old brother — is growing.

On Saturday, Julien, his parents, Mélanie and John, and his brother, Raphael, arrived at Winnipeg’s Richardson International Airport to start their new, permanent life here.

“We fell in love with Winnipeg and Winnipeggers,” said Mélanie through a friend who translated for her.

“It’s the kindness of people. The vibrant culture. And it’s the place in the world that knows the most about this disease.”

Julien spent most of his first few minutes in Winnipeg riding on a suitcase through the airport from the luggage carousel to the facility’s Tim Hortons outlet. He then ran and played with his brother on the play-structure equipment there, ringing a bell, crawling through a tunnel and sliding down a slide.

“When we first came here, he was using a wheelchair,” Mélanie said.

“He was on morphine twice a day. Now look at him run around. And he doesn’t need morphine.”

Mélanie said the child does have to inject the drug that fights his disease three times a week, a regimen he may have to follow for the rest of his life. He has grown 13 centimetres taller in recent months thanks to the drug.

Mélanie, whose family stayed at Winnipeg’s Ronald McDonald House in 2010, said she never would have dreamed when Julien was born nine years ago she would someday be uprooting her family and leaving relatives and friends behind to move to Winnipeg.

“Nine years ago, after his diagnosis, we thought he was going to die,” she said.

Because there was no cure, Mélanie said the couple created a non-profit organization for research into the illness, finally funding a conference bringing in researchers from around the world in 2007.

“There was a person from a Montreal lab who said they had found the remedy for the disease. We harassed them for three years to let Julien be part of the experimental treatment. When they said yes, we came to Winnipeg.”

Julien’s parents will begin looking for jobs this week. Mélanie worked as an accountant for a national company in France while John drove a truck for a public works department.

“Winnipeg has given our son a new life,” Mélanie said. “We are happy to be here.”

kevin.rollason@freepress.mb.ca