Émerick’s Story: A Family’s Hope for a Life Without CF

I’m Virginie, mom to Émerick, an inspiring 7-year-old boy deserving of a life without CF. Émerick is a bright and curious boy who has a deep love for learning and exploring nature. He enjoys playing with dinosaurs, Legos, and he knows the solar system by heart. As a family, we cherish our time together and often engage in activities that allow us to appreciate the beauty of the world around us. He is a sensitive, generous and endlessly curious child. 
 
When Émerick was diagnosed with cystic fibrosis, it was a difficult moment filled with mixed emotions for our family. As first-time parents, we were overjoyed with the anticipation of welcoming our child into the world. However, during the 20-week ultrasound, we received the unexpected news that Émerick had a hyperechogenic bowel, which led to concerns about CF. The diagnosis was confirmed through an amniocentesis, and it felt as though our world was turned upside down. We experienced a range of emotions, from doubt and fear to disbelief and sadness. The fact that no one in our family had previously been affected by this disease added to the shock. We couldn’t comprehend why this was happening to us and, more importantly, to our little boy who had barely begun his journey in life. We quickly rallied together, raised funds and became active advocates for the cause.  

 Understanding the impact of CF on Émerick’s daily life was a process that required education and support. I was fortunate to work at a hospital with an adult CF clinic, which provided me with valuable knowledge about this disease. We came to realize that Émerick would face numerous challenges, including respiratory therapy, chronic fatigue, multiple medications, coughing, digestive problems and breathing difficulties. It was daunting to comprehend the lifelong nature of these challenges, but we received tremendous support from the CF clinic and the community. 

Cystic fibrosis is an invisible impediment. At a glance, you wouldn’t realize the extent of what Émerick and all of those living with CF go through. Our days revolve around his care, treatments and managing CF in various aspects. Émerick’s evenings are spent doing treatments, completing homework and going to bed exhausted from a day during which his body is constantly battling. However, amidst the challenges, our home continues to be filled with love through an unbreakable bond Émerick and his two younger sisters share. We all support and protect one another, creating strength within our family.  

Our experiences have also taught us the importance of raising awareness and funds for CF research. Not everyone has access to groundbreaking medications like Trikafta, and for people like Émerick, who have rare mutations that can’t benefit from existing treatments, research is our only hope. We have witnessed remarkable progress in CF research over the years, and our hope grows stronger. We believe that through CF Canada’s efforts, there will come a day Émerick and thousands of others with cystic fibrosis will receive the treatment they need. 
 
When I think of a world without CF, I see Émerick and his personal freedom. Freedom from the confines of his own body, which grows wearier each day because of this disease. This vision of freedom helps us continue to channel our energy into raising awareness and rallying support for the cause, ensuring that Émerick and all those living with CF are given the chance to live their lives to the fullest.  

Émerick’s journey with CF has taught us the power of not only love, resilience and hope, but what research and fundraising for the cause can do. We remain steadfast in our commitment to supporting him and CF Canada’s mission. To anyone considering supporting or donating to Cystic Fibrosis Canada, your support goes beyond monetary value; it offers Émerick and others another chance to experience the pure joy of life without stipulations. Every donation allows us to cherish another day together and gives us hope. Your generosity will help accelerate us towards a world without CF.  

So today, we’re asking you to come together with us and support a world where Canadians with CF can live W/O limits. Donate now!