I was 4 and a half when I was diagnosed with cystic fibrosis (CF). Prior to my diagnosis, the doctors didn’t know what was wrong with me. According to my mom, my stools weren’t right, and I ate a lot. The doctors didn’t think of CF right away. It wasn’t until I had finally done the CF tests that my family found out I had it.
I’m 16 now, and I try not to let this disease get in the way of the things I like to do the most. I do a lot of skiing, for example. I’m a ski instructor at Val Saint Côme in Saint-Côme, Quebec, and it’s something that I put a lot of effort into. In the summer I do a lot of biking – at least I try to. Sometimes, with my lungs, when it gets too warm outside I get dehydrated too fast and have to stop.
I start each day with treatments that take a minimum of one hour to complete. In the evening, I do another round of treatments for another hour. Sometimes I even have to plan treatments in between my morning and evening ones, so it takes a lot of organization on my part to keep up with it all. My friends help me think of other things though, things that don’t have anything to do with CF so I don’t have to focus on it too much. They help me live better with my disease.
My parents are really supportive as well, but in a different way. They are more involved when it comes to reminding me about my treatments, and helping me with day to day tasks that come along with living with CF. My family and friends are a huge part of my life. More than they’ll ever know.
This holiday season, the most important thing for me is getting together with my friends and family. There was one time during the holiday season where I had to go on insulin because of a medication that made my blood sugar get too high. Giving myself injections on Christmas wasn’t fun that year, but I was happy to at least be surrounded by my friends and family.
If I had one holiday wish, it would be to not have this disease anymore. Sometimes I just want to think about other things that don’t involve CF.
I try to stay positive, though. I always tell myself that every disease has a “super power” behind it. While I may have trouble gaining weight due to CF, I won’t ever become overweight! Ultimately, if you see CF as just a barrier, you won’t have the motivation to carry on through life. You have to find that motivation to want to carry on, in my opinion. This is how I manoeuvre through life. I want to be able to thrive in spite of this disease.
I became involved with CF Canada because I know I’ll be helping families in Québec and all over Canada. There are children with my condition who cannot do all of the things that I do due to the severity of their CF. I encourage others to get as involved in ending CF as I am. The best way to support the CF community is to donate. I think everyone says that, but donations help with CF research and clinics so that one day we’ll overcome this disease.
Cystic Fibrosis Canada needs your support this holiday season to continue to move forward so that one day a long and healthy life is no longer a wish—but a reality.Donate now to help teenagers like Samuel live to their full potential.