DECEMBER 8, 2022
Cystic fibrosis entered our lives without warning over 21 years ago.
It all started when my beautiful daughter, Daphnée, was showing signs of poor absorption and struggled to regain her birth weight. Luckily, our family doctor suggested that we test Daphnée for the newborn screening and that’s how we discovered after 3 weeks of life, that Daphnée had cystic fibrosis (CF). She was diagnosed with a rare type of CF. My husband and I were shocked. I wanted to do anything I could to make sure that my daughter would be able to live life as normally as possible without worrying about her future.
So, I’ve become deeply involved in the cystic fibrosis community here in Charlevoix, Quebec. I’ve been a part of many different CF committees and have participated in several fundraising events, all in an effort to raise critical funds for CF research. Research that will lead to more innovative and life-changing treatments and therapies like Trikafta.
I’ve seen what this life-changing drug has done for others, the optimism and reassurance that it has given to many Canadians in the CF community who could benefit from it. Unfortunately, my daughter doesn’t qualify for Trikafta, given her genetic makeup. However, we strongly believe that our time will come for a ‘miracle’ drug too, and that’s because we have one thing that has kept us going all these years: Hope.
I’m so proud of my daughter. Currently, Daphnée is in the process of obtaining her diploma as a special educator while working full-time as a care assistant with people struggling with mental health. She continues to do everything in her power to achieve her goals despite her CF. This magnificent young woman – determined, sensitive and attentive to others – impresses me day after day. She knows her limits, but her limits do not know her!
I look forward to the day my daughter can start living with excitement, knowing that she will be able to work towards achieving her dream of opening a café run by a diverse group of individuals. The day she learns that she will be able to spend the holidays with her goddaughter, boyfriend, grandparents, and the rest of our family without having to keep her distance. The day when we too will be able to say that our lives have changed for the better and we can finally breathe.
This hope is why I continue to fight for Daphnée and others like her. It’s important that we keep funding cystic fibrosis research and fighting for access to medicines so no one, including my daughter, is left behind. I truly believe that promising new treatments and therapies are within our reach – so we can’t give up.
While we wait for this glorious moment, every dollar raised has its importance and every small gesture makes a huge difference. Please support Cystic Fibrosis Canada to give Hope for All this holiday season.