YELLOWKNIFE - A Yellowknife man will ride his bike more than 3,000 kilometres to raise money for a niece afflicted with Angelman syndrome, a genetic disorder discovered in 1965.

Lauren Wiebe is afflicted with Angelman syndrome, a genetic disorder causing seizures and feeding problems. Her uncle, Yellowknifer Cory Redwood, is undertaking a bike ride from Yellowknife to downtown Winnipeg to raise awareness about her illness. - photo courtesy of Shawnalee Wiebe

Cory Redwood will leave Yellowknife on Canada Day, and plans to reach downtown Winnipeg in 20 days with his wife, Shawnalee, who will follow him in a trailer loaned to the Redwoods by a Winnipeg trailer company.

The trip is a first for both.

"I'm not an avid biker," admitted Cory. "I've never attempted anything like this. But I've been training for eight months on a stationary bike in my house."

"I've never driven an RV before," echoed Shawnalee. "It's going to be an adventure."

Their niece, Lauren Wiebe, was diagnosed with Angelman syndrome after being born two months premature in Oak Bluff, Manitoba.

"She was in the hospital for the first month of her life, on an incubator," Cory said. "She started having tremors and trouble feeding. That's what set off alarm bells.

"We assumed it was because she was premature. After six to eight months, the tremors were getting worse. She kept throwing up anything we put into her."

People with Angelman syndrome often experience intellectual and developmental delay, speech impediments, seizures and a consistently happy demeanor, according to the Canadian Angelman Syndrome Society.

The syndrome has been frequently confused with cerebral palsy and autism, and has been reported in approximately 1,500 cases in North America.

"When you look at Lauren when she's smiling, you'd probably have a hard time knowing that there's anything wrong with her," said Cory.

But Lauren's cheery disposition masks a number of impediments that will limit her development for the rest of her life.

"Highly functioning 'angels' can work, they can walk, they have a small vocabulary of maybe 10 words. But Lauren won't be able to work or speak. She can't walk right now. They're talking about her mental age being 9 to 10 months, and that it will remain that way.

"We're kind of blessed that she doesn't know. She'll never be able to understand [her condition]," said Cory.

The demands placed on her parents took their toll, according to Lauren's father, Anthony.

"When we first realised there was something wrong, I was living in Swift Current, Sask. at the time," he said. "So for any ill effects she had medically, we had to drive to Saskatoon, which was a three-hour drive away, and then stay in hotels. That was six hours of driving just to go see the doctor and back."

Finding the right combination of drugs to treat Lauren - which can sometimes take years, according to a volunteer with the Society - has cost $400 to $450 a month, said Anthony.

"It doesn't sound like a huge deal, but compared to normal kid, it's a hell of a hit in the pocketbook," he said.

None of Lauren's medication for the syndrome is covered by the province, added Anthony. Lauren's condition requires 24-hour care.

During the daytime she's provided for by a day care for special needs children.

"It was tough on our marriage," said Anthony of Lauren's diagnosis. "We were fighting quite a bit. But now that we've learned to deal with it...it's not as stressful."

The Wiebes moved to Winnipeg in 2004.

It was during Christmas 2005 that the idea to fundraise a trust fund for Lauren came up. The bike trip, aimed at raising awareness about the syndrome, was an idea struck upon by Cory's wife and Anthony's sister, Shawnalee.

"We were sitting around and the finances came up - what it was going to cost," said Cory. "My wife said to me, 'Why don't you ride a bike from Yellowknife to Winnipeg?'"

Asked how he initially reacted to his brother-in-law's plan, Anthony said, "Disbelief at first. Like, 'Are you nuts? Is this just talk?' But, it's been two years in the planning. But as we got closer, I never thought it was going to happen. But Cory's going forward with it.

"There's four days left. So no time to back out now."

The family set up a web siteinviting people to make donations in one of two areas: Lauren's trust fund, or another fund devoted to the Society.

"Thanks to the Society, the parents trying to deal with the syndrome have a conduit to talk about it and share stories," said Cory.

Shawnalee will drive the trailer, loaded with everything from food and water to extra bikes, at 30 kilometres an hour.

Now that his disbelief has worn off, Anthony is bowled over by the support his family has shown.

"I've got the best family in the world."