'Butterfly child' has dream to see northern lights

Northerners are extending support to a 14-year-old boy from Ontario who is dreaming of seeing the northern lights.

Jonathan Pitre has a rare skin disorder called epidermolysis bullosa. Young people with EB are sometimes referred to as "butterfly children," comparing their fragile skin to butterfly wings.

• Click the link on the left, for the full conversation with Jonathan Pitre

Jonathan lives with his family in Russell, Ont., southeast of Ottawa. His body is covered with dressings from his neck to his toes because of open lesions, says his mother Tina Boileau.

“There’s not one second I’m not in pain,” Jonathan says.  “Even when I’m sleeping, I can feel the pain.”

By going to the northern lights, I hope I can get closer to all those that we have lost.- Jonathan Pitre

Jonathan’s story first appeared in the Ottawa Citizen, which led to people donating money to help fulfill his dream to see the northern lights.

That desire began two years ago when he joined Facebook, allowing him to connect with an online community of people with EB. According to DEBRA Canada, an organization that helps support people living with EB, there are about 2,000 people with the skin disorder in Canada, each with varying degrees of severity  

While this online community allowed Jonathan to correspond with people sharing his experience, it also widened his grief whenever he learned that someone with EB died.

"And that just breaks my heart, every time." he says. 

“When we go up in the sky, I like to believe that we move on to a very pretty place. So by going to the northern lights, I hope I can get closer to all those that we have lost,” he says.

"We’re all so beautiful in our own ways, on the outside and inside, even if not all people understand that. I’d just like to pay my respects and wish them a long and good rest.”

Since then, hotels have offered accommodation and airlines have offered flights to Yellowknife, Whitehorse or both.

“The North has been amazing,” his mother says of the offers the family is receiving.

Allan Moore, chief operating officer of Air North, says the Yukon-based airline wants to help.

"Our desire is to make sure he sees the northern lights, number one," he says. "Number two, that he's well-looked after, and number three, that he has a good experience with us."

The family hasn't decided which destination they will visit.

“Jonathan wants to see the northern lights,” his mother says. “But he also wants to see glaciers and grizzly bears.”

A challenging trip

Travelling to the North poses some complications for Jonathan, such as ensuring he's comfortable during the flight. He has only flown once, on a 35-minute trip to Toronto.

He will also need accommodations with a bathtub for the routine of soaking in the tub, removing his dressings and reapplying them. The process takes Jonathan and his mother nearly four hours every second day.

The family hopes to make the trip in August 2015. Jonathan wants to see the lights at peak time, but the travel date will depend on how he is feeling.

My life expectancy is like, around 25 years, so I am just trying to live one step at a time, day by day, because you never know what tomorrow will bring.- Jonathan Pitre

Boileau says her son’s condition will progressively worsen. Right now there is no cure for EB, but the family is hopeful.

“We’ve seen a very big change in the last year, even in the last four months,” she says.

“I don’t know what his future holds."

But Jonathan's attitude remains positive and upbeat.

“I don’t have time to be down,” he says.  

“Life’s too short. My life expectancy is like, around 25 years, so I am just trying to live one step at a time, day by day, because you never know what tomorrow will bring."