Samuel Carey was told that a long, rich life was off-limits to him.
"The doctors said there was nothing I could do - that I would just die in a matter of a few years," recalls the 39-year-old Yorkton area man.
Carey was diagnosed with alpha 1 antitrypsin deficiency (A1AD) at the age of 17. This rare genetic disorder involves defective production of the alpha 1 antitrypsin protein in a person's body, often leading to liver and lung disease. The possibility of liver failure is one fear that sufferers have to live with throughout their lives, but on a daily basis they must also contend with decreasing muscle mass, lack of energy, and susceptibility to respiratory infections.
"You might have the flu for a week or two, and I would have it for a couple months," says Carey.Despite following medical advice to exercise regularly, eat a balanced diet, and avoid aggravators such as alcohol and tobacco, the father of four found himself growing steadily weaker and less able to keep up with his children as they grew.
In March, Carey decided to make one more attempt at finding a better approach.
"I was missing out on too much, and the doctors really couldn't tell me what to do to get any healthier. So I found Alpha 1 Canada, which is a charity that puts out a lot of information on how to live with the disease."
Carey implemented a series of changes in his life, the most significant of which was switching to an 80% protein diet.
"It made a huge difference," he says. Carey began losing fat and gaining muscle. His endurance went up along with his resilience.
"In four months, I haven't even had a cold."
Amazed with the transformation, Carey decided his next step was to spread the word about what he had learned.
"I wanted to help other people who have A1AD and I wanted them to learn that there is hope to live a semi-normal life," he explains. "I tried to think of something I could do to gain a little bit of attention and to show at the same time the advancement that was made in my own health. So I wanted to do something physical."
What he came up with was the "Alpha 1 Adventure": a multi-stage test of willpower to raise awareness of his progress along with a little bit of cash. Stage 1 would be a solo bicycle trip across the province.
It was a lofty goal. Carey is not what you would call a lifelong athlete - he didn't even own a bicycle at the time.
"Just a few months ago I was actually forty pounds heavier and spending a lot of time ill and bedridden," he says.
The long hours needed for publicity and fundraising were another problem. Carey soon enlisted the help of a friend for these jobs - a woman who prefers to simply be called "PJ" so as to stay out of the limelight.
"We're very good friends, and I think what he's doing is really nice," PJ says. "We talked about it and thought that if we worked together on this, it could be a really good project."
Meanwhile, with a bike purchased at a yard sale, Carey trained hard for two months. Spotting a rare string of days with no rain forecast, he set out from Lloydminster on June 5. He crossed the Manitoba border near Langenburg, SK three days and 700 km later. The trip was exhausting, but a great success.
Carey now has his sights set on Stage 2 of the Alpha 1 Adventure: a trip across Saskatchewan by canoe, with a tentative start date of August 1.
This journey will be much more difficult. Carey will face at least 1000 km of intense upper-body work down the South Saskatchewan River. He has no solid estimate of how long it will take to navigate the maze of winding waterways, but he is prepared to spend several weeks in the attempt.
Carey began training on the water just last week using two paddles built in his home workshop and an entry-level canoe. For her part, PJ has been canvassing stores in Yorkton for donations toward the campaign's first major fundraiser, an online charity auction.
"We're going try and raise some funds, because it does take a little bit to travel around to these different places," explains PJ. "Most of it is just coming out of our own pockets."
The campaign has already received donations of merchandise valued at about $2,000, and bidding started this week. Any excess raised will be donated to Alpha 1 Canada.
It's not the only fundraising initiative the pair has in the works. Carey has written a short novel for pre-teens titled Bint. He and PJ hope to sell it online and in stores around the Yorkton area, with all money from sales funding the Alpha 1 Adventure.
"It's this story I wrote for my kids about this little Jack Russell dog - you know, the classic adventure tale of a child whose plane goes down in the wilderness and she's got to survive."
Carey also plans to put proceeds from his home-based business, Arctic Toboggan, towards the cause.If the canoe trip goes well, Carey envisions even bigger things for his Alpha 1 Adventure.
"As long as my health holds out, next year I would like to either cycle or canoe right across Canada."The idea sounds almost impossible, but Carey has already shown that he is not deterred by the impossible.
Updates on Carey's progress can be viewed on his blog at samuelcarey.blogspot.com. More information on the Alpha 1 Adventure and links to online auction items are posted on www.arctictoboggan.com. The auction began on Monday and runs for two weeks.
The campaign is also seeking volunteers to join PJ's team. "I have lots of ideas for other fundraisers," she explains, "but I can't do it all myself."
In the meantime, Carey will be intensely training for his toughest journey yet.
"I want to show people with this condition that they can still get out there and have great adventures," he says.
