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Volunteer Advocate
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Anne-Sophie Barrette: How can I not keep smiling?

My name is Anne‑Sophie, I’m 26 years old and I’m a pastry cook. I have two extraordinary parents, who are more loving, devoted and generous than you can imagine. I have an older sister who also has cystic fibrosis. She’s 29 years old and received a transplant five years ago. Nearly two years ago, she gave birth to a baby girl, a little miracle she named Lily‑Rose. I was diagnosed with cystic fibrosis at birth. Since my older sister had the disease, I was tested right away.

The first years of my life went by without any problems. My first case of pneumonia came when I was six years old. I was hospitalized for several weeks. That’s when I realized that I had a fatal, incurable disease. While my friends were learning their ABCs, I was fighting for my life. However, I recovered and was fine for the rest of my childhood. I was a straight-A student and participated in many extracurricular activities.

My disease started to be more aggressive when I was 14 years old. I spent my fourth and fifth years of secondary school in the hospital. At 17, I was placed on the Transplant Québec waiting list because I only had two years to live. I finally received my transplant when I was 19. Afterwards, I had four wonderful years during which I completed my pastry-making course at the Institut de tourisme et d’hôtellerie du Québec (ITHQ), had all sorts of romantic experiences, worked, moved into an apartment, got a tattoo, went skydiving and travelled the world. But in late 2016, the disease got worse. After four months in the hospital, I received a terrible diagnosis: chronic rejection. I became oxygen-dependent again. In late 2017, I was once again placed on the Transplant Québec waiting list for a second transplant.

My condition deteriorated very quickly. In May, a nurse found me unconscious in my hospital bed. I was immediately transferred to the intensive care unit and intubated. I received my transplant just in time. This second transplant was not an easy process. I experienced countless complications, but after a great deal of effort, I recovered. In September, after five months in my hospital bed, I was finally allowed to go home. I’m currently living with my boyfriend and I even started working again part-time. I can see my niece every week, exercise and take care of my best friend that also has cystic fibrosis and that I met in the hospital when we were kids.

Many people ask me how I’m able to keep smiling through all the challenges that I have to face, knowing that my life expectancy is only a few years. The answer is simple. I know how fragile life is and I realize that it’s a miracle that I’m even alive. How can I not keep smiling? I’m incredibly lucky to have the opportunity to write this text right now. In fact, I just stopped writing for a few seconds to close my eyes and fill my lungs with air.

A better question would be, “How can I not smile when I’m breathing freely and no longer have any tubes coming out of my body?” How can I not smile when I’m home instead of in a hospital bed? How can I not smile when I can wake up every morning? Of course, I have many questions about the future. I wonder when the disease will start to take over again. That really scares me. I’m incredibly afraid of the day when I’ll need an oxygen tube to breathe again. I’m scared of not getting enough air. Just the thought of it makes me panic. I’m afraid of dying. I’m too attached to my life and to my world to die. I also wonder if I’ll ever be a mom. It’s my greatest dream. In the meantime, I try to be grateful for each day and trust that everything will work out for the best. I thank heaven every day for this reprieve.

It’s important to give to Cystic Fibrosis Canada so that all the people living with this serious disease can have the opportunity to make a few of their dreams come true, just like I did. It’s important to give to Cystic Fibrosis Canada so that we can have the best possible quality of life for as long as possible. It’s important to give so that a cure can be found and this disease can be eradicated once and for all.

Thank you for your support and generosity.

Anne-Sophie

Help Canadians like Anne-Sophie find answers to the hard questions that come with cystic fibrosis.

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