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Rhys - Breaking the ice: Life of a youth with hemophilia north of 60

In January 2014, my mom and dad decided that they wanted to fulfill a lifelong dream to experience more of Canada and move to the Great White North. After a lot of consideration, my parents decided that we would move to the Yukon, a territory where the Watson side of my family has been living since the 1940s. This move came with its own opportunities and challenges, especially for me. My dad transferred from the Department of National Defence to the Royal Canadian Mounted Police and my mom accepted the position of manager of accounting at the Yukon Hospital Corporation, both jobs in Whitehorse.

By July, my mom and baby sister Ariana had moved and were living in Whitehorse. By August, my dad brought my sister Teaghen and I for a house-hunting trip. It was a long journey, but worth it. We arrived in Whitehorse just past midnight and a bright green aurora borealis filled the sky. We checked into our hotel and went to bed right away. Teaghen and I knew that in six hours we would have to get up for school. It was August 27, 2014, and Teaghen and I had already missed the first two days of school! Though we complained about it at the time, we now appreciate the early start of the school year – it allows Yukoners a two-week March Break and the school year is over by June 15, two weeks earlier than what we were used to. My dad returned to Nova Scotia after 10 days to finish moving arrangements and Ariana, Teaghen, Mom and I were on our own, until Dad returned in November.

This is where I started to realize that I must start advocating for myself much more than before about my bleeding disorder. My parents have always typically looked after informing and educating others about my hemophilia. This time was different, with my mom busy at her new job and my dad away. I was 14 years old and knew I had to start taking more responsibility for my bleeding disorder and be more mature about my choices. It was time for me to grow up. Now was as good a time as any.

The Yukon is a rugged and beautiful place, with 482,000 sq. km of land and emerald lakes, and only 37,000 people inhabiting the entire territory. About 75 per cent of the population live in the capital, Whitehorse. Moose outnumber people 2:1 and there are as many grizzly bears and black bears as there are people in the entire territory. There are also mountain lions (cougars), bison, lynx, fox, coyotes, mule deer, elk, caribou, porcupine, beaver, squirrels, wolves, and mountain goats, all of which are easily spotted and sometimes in large groups. Needless to say, Dad is taking me on my Hunters Safety and Firearms Courses so that we’ll have added protection and comfort while outdoors. On top of the usual risks that I had before and the new animal risks, I now have to deal with a far different climate than I did in Atlantic Canada.

My family and I have travelled by car several times to Alaska, USA. On these long trips over mountainous terrain, I carry extra factor just in case. Driving in Canada’s North, for eight months or more of the year, there is snow and ice on the roads. It also gets very cold, down to -40° to -50° C; frostbite can happen before you know it, so I bundle myself up and my medication if it’s very cold. Communities are on average two to five hours’ drive away from each other, have small populations and have only nursing stations. Added to this, 9-1-1 service doesn’t exist in between communities, let alone cellular phone coverage. An accident due to bad weather, animals crossing the road or otherwise means that you’re likely on your own for a while. I really have to be self-sufficient, wear my tag, have factor in the vehicle along with the roadside emergency kit, carry my FactorFirst card in my wallet, have satellite communications, and make a travel plan so that people know where I am going and ensure that I make it there.

Living in this isolated part of the country also means that I have to have more factor on hand. Prior to my arrival, my medication wasn’t stocked in the Whitehorse General Hospital’s pharmacy. I’m thankful this was arranged for me by the BC Children’s Hospital in Vancouver. Heck, I’m a teenager now and have grown taller, stronger and more active than ever before. I also travel by air more than I did before – over long stretches to other provinces such as Alberta, British Columbia and Ontario for Cadets, band and my six-month check-ups at the BC Children’s Hospital. I always keep a copy of the letter from the HTC with my identification so I can carry my factor on flights.

Living “North of 60” means that I have to be much more responsible, mature and self-sufficient. I am literally the only pediatric hemophiliac in the entire territory. What does this mean to me and the people I meet? It means that I have been continually teaching people about what I have and what I do not. In many cases, there’s almost no knowledge of hemophilia here beyond my parents, sister and family doctor. At times there is a sense of fear of the unknown amongst the groups and activities that I engage in from Cadets to band, school, church and snowboarding. I had to educate each group, most of whom took a lot of interest, asked many questions and were very positive.

I have been very impressed with two people in particular who are involved in my physical activities, both of whom brought me into their groups without any hesitation due to hemophilia. They knew nothing about hemophilia but were ready and eager to learn. The first is my physical education instructor at Porter Creek Secondary School, Mr. MacDonald (aka Mr. Mack), who makes me feel confident every day that I can achieve many things and be included in many physical activities as long as I remain aware of the risks and take my medication when needed. I have shifted my prophylactic treatments to the mornings instead of the evenings to make sure I am prepared for his classes. The second person is the president of Snowboard Yukon, Sergeant Yule, an RCMP officer who has previously worked with people with different challenges including Paralympians. He simply listened to me, asked how to treat my bleeds and injuries, and makes sure I am always safe. He even donated to me boots, a snowboard and, most importantly, a quality helmet.

My new friends are into the same interests as me such as collectible cards and video games; however, they are also involved in many outdoor activities that pose new risks. They also know about my bleeding disorder and have welcomed me into their group. Everybody either mountain bikes, skis, skates or snowboards. During the winter, most activities are on hills and trails much higher, steeper and longer than back out East. I have joined the Yukon’s snowboard team, the Shredders, to learn how to engage in this sport safely and responsibly. As this was a new challenge for me, I knew that I had to have the right equipment and lots of training, and take it easy on the hills until I build my skills and confidence. My goal is to become Snowboard Bunny Hill Champion of Mount Sima! I am fully aware of the risks and have weighed them against the benefits; I always have medication nearby (and on me) and people know what to do in an emergency.

When I look back over this past year and our move to the Yukon, I don’t believe I would have been as successful in teaching others about my bleeding disorder if it wasn’t for the efforts of many people over the years. My family, nurses, social workers, physiotherapists, doctors and all the staff at the hemophilia treatment centres, along with training at Canadian Hemophilia Society summer camps and family weekends, have made me stronger. I have met others with hemophilia and have learned how to self-infuse. All of these people continue to be important in my life and provide ongoing education, training and guidance that enhance my knowledge, confidence and skills to better manage my condition. I know I have a whole lot more to learn and share with others. For now, living in this beautiful part of our country rife with opportunities, challenges and risks has been good. Though I am sure that I will face challenges in the future, with continued support from my family, the HTC and the CHS, I will be ready when that time comes.

- March 2016