My name Is Tori Taskas, I’m 19 from Toronto, and I have cystic fibrosis. If you saw me in my everyday life you would think I’m just a normal teenager. I’m a full-time student, I like to go out and have fun with my friends, I love to sing and play music, and I do everything I can to enjoy life to the fullest. What most people don’t see is all the hard work I put in behind the scenes to stay healthy every day.
I was diagnosed with CF at birth. Growing up you could say I had a pretty normal childhood. It wasn’t until I was around seven years old that I had to be admitted into the hospital for the first time. I don’t remember much of that hospital visit, but I do remember seeing my dad cry for the first time and me telling him it would be okay (Can you imagine that?). Fortunately, I recovered quickly and went six whole years without ever being hospitalized again.
It wasn’t until I was 13 that my health started to suffer and I was diagnosed with CF-related diabetes. On top of all my CF medications and therapy I now had to add checking my blood sugars and taking insulin injections to my already long list of treatments. Transitioning to high school can be hard for any young adult, so it didn’t help when I started to be hospitalized every year for lung infections as well. I would spend a few weeks in the hospital on IV and then come back to school on a portable IV because I didn’t want to fall behind. I began to feel different and I began to feel isolated from my fellow peers. I was always being pulled out of class to have a nurse tend to my IV and it would consistently beep and draw attention to me in the middle of class. It was hard, but I was ambitious about my future and I wasn’t going to let an infection stop me from getting a good grade.
I hope that one day I won’t have to worry about when I’ll be in the hospital next due to a lung infection. I said this statement in one of the campaign videos for Cystic Fibrosis Canada. Afterwards, my dad asked me if that’s really what I wanted to say? He thought people might not understand how taxing and devastating the disease can be, and I agreed. This statement is deceivingly simple to someone who has no experience with CF, yet it carries so much weight for me. I have had to miss months of high school because I was sick with a lung infection. I had to drop out of my second year of university because of my health. I had to quit my dream first job as a dog groomer because the hair was bad for my lungs. Sometimes it’s even the small things that most people take for granted; like going to a party with friends or spending time playing with my dog. I constantly worry about when I’ll be in the hospital next, and what I will miss out on this time.
You would probably think after a few admissions to the hospital it would become easier, but it doesn’t. Every time I have to come in for treatment I am devastated. It means putting my life on hold for weeks so that I can get better. But I have hope. I see amazing new advancements in the world of medicine every day and I have more hope than ever for a bright and joyful future. This is why I have joined the CF Canada campaign to make the drug Orkambi accessible to all who can benefit. While this drug specifically won’t help me, I never want anyone to struggle the way I have. I hope for a future where people with cystic fibrosis see relief of their symptoms, and new children born with CF never have to face the hardships I have. It starts with public access to Orkambi, and I hope one day I will be a part of a future where CF stands for Cure Found.
For Tori and everyone else affected by CF, help them live longer and healthier lives by signing and sharing our online action: https://bit.ly/2FxZuCl