When living with a rare and fatal disease like cystic fibrosis (CF), simple moments of joy are extra special. As a result of generous donor support over the years, people living with CF are living longer lives and are planning for moments that were once unimaginable, such as going to university, getting married, or watching their children take their first steps. However, we are pushing further so that these special moments and more, are not just hopes, but realities for all Canadians living with CF.
On November 23, 2020, we launched our 2020 holiday giving campaign called, Moments. Last year, you helped us raise more than $270,000 to help people with CF live longer, healthier, more fulfilling lives. This holiday season, we are asking you to help us push further for Canadians living with CF, so that they may have a full lifetime of special moments.
The Moments campaign features three individuals/ families living with CF. Meet Hailey, Megan, William and Leonie as they share their story, hopes for the future and special moments that they are looking forward to.
I’m Hailey Samm Laxer and I’m a 26-year-old living in Toronto, Ontario. I was diagnosed [with cystic fibrosis] at 4 months old because I wasn’t gaining weight, and my mom noticed that I tasted salty when she kissed me. This tipped the doctor off to the fact that I might have CF. Understanding my CF has been a long road.
I was a curious kid and one day I came across an article about a CF fundraiser and that’s where I read for the first time the word “fatal” associated with cystic fibrosis. At the time, I didn’t really understand what fatal meant, so I looked it up and I saw that it meant ‘causing death.’ That was the moment I knew that my life was going to be heavily impacted by this disease. I didn’t really know how, but I knew that my life was going to be a lot shorter than I initially imagined. This expiry date of 37 (at the time) really began to guide my decisions and continues to subconsciously guide my decisions today. I know that you must be intentional about your time and impact because life is so short and so precious.
I recently got engaged and I’m currently planning for my wedding while facing ongoing challenges because of CF. When I envision the future, I am looking forward to more adventures, trying new activities, taking up new hobbies and interests, celebrating everything and truly living, rather than just existing.
My name is William Côté and I am 23 years old. I live in Sherbrooke, Quebec with my partner, Karen, and our two children, Miya 5, and Emile 4. I have an older sister, Leonie who is 25. We both live with cystic fibrosis. I was diagnosed first at the age of 4 months old and 2 days later, my sister Leonie got diagnosed as well. Growing up together while having CF was strangely the best gift we could have received as living with this disease can be extremely isolating. Both of us having CF brought us closer together and helped us live a seemingly normal life.
My sister and I are big advocates – she has access to Trikafta, but I don’t. The moment I am looking forward to the most is when me and all Canadians with CF get access to the miracle drugs that are already in the market, and those to come. I look forward to the day when I will tell my family and friends that I can stay a while longer with a better quality of life.
One of my biggest dreams in life was to have children. I knew that I couldn’t have biological children without expensive medical procedures. However, over a year ago I met Karen and her two little bundles of love, Miya and Emile. Since then, we have bought a house and are thinking of getting married in the future.
My name is Megan Parker and I live with cystic fibrosis. My family is composed of my husband of almost 12 years, Jordan, our two sons, Charlie and Desmond (7 years old twins), and our dog, Lucy. We are from Calgary, Alberta. We are a busy and active family and love everything to do with the mountains. Our most favourite things to do together are camping, hiking, and skiing.
I work incredibly hard just to be able to do the things that most people take for granted, like walking my kids to school, getting to work, kitchen dance parties while cooking dinner, reading before bed, etc. I need to dedicate over two hours of every single day doing inhaled medications and completing chest physiotherapy. This is on top of doing some form of cardio exercise almost every day which is also essential for my lungs. I take over 20 pills a day plus four different shots of insulin. As a mother, there is an instinctive need to put your kids first. However, when you are a mother with cystic fibrosis, you can’t put your kids first, cystic fibrosis always has to come first.
I want to see my kids growing up, I want to celebrate more anniversaries with my husband, I want to be able to retire because I’ve had a full and meaningful career, I want to be able to have the honour and privilege of growing older and celebrating more birthdays. All I want is to have the extraordinary privilege of living a normal and ordinary life.
How will you push further for Canadians with cystic fibrosis this holiday season?
This year, when you give, you have DOUBLE the impact thanks to two generous private donors who are matching all donations up to $150,000. Your donation today will help people living with cystic fibrosis live longer and enjoy a better quality of life. For a lifetime of special moments.
Until December 31st, two generous private donors are matching all donations to this holiday giving campaign up to a maximum of $150,000. Give now and double your impact!Give today