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Volunteer Advocate
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Whatever it takes; for my daughter not to face this alone

Living in Canada, where many people receive the health care they need, is a privilege. But many people receiving care is not everyone – and it’s not enough. The gaps in our broken health care system are easy to ignore if you’re not directly impacted, or know someone who is falling through the cracks.

I didn’t know about the gaps that exist until my daughter Cassidy was diagnosed with cystic fibrosis (CF). I was shocked, but I assumed that she would receive the very best treatments available to help her stay healthy as long as possible. I was wrong. My heart broke when I learned that there are medications like Orkambi that could help Cassidy, but she can’t access them. It felt so deeply unfair, that a child is being denied access to vital treatments because it’s not covered by our health care system. And there are promising triple therapies on the horizon, which unless there are policy changes, will likely also be unavailable to her.

As a mother, you would do whatever it takes to protect your child. I have become very involved in advocacy because I know that I can’t take CF away from Cassidy – if I could, I would in a heartbeat. For now, advocating and speaking out for those in the rare disease community is my way of being able to create change. Canada is one of the only first world countries without a rare disease drug strategy. It’s devastating knowing that my child’s life rests in the hands of politicians who have the power to approve, or not approve the policies and procedures that directly affect access to medications, our health care system and ultimately Cassidy’s quality of life. I can’t patiently wait for change when the outcome is so closely linked to my daughter’s life. The reality is – people with rare diseases, like CF, don’t have time to wait.

As a mother, I have always believed that Cassidy needs to be involved in conversations around cystic fibrosis that are age appropriate. Since Cassidy was five years old, she has actively participated in community fundraising for Cystic Fibrosis Canada by selling lemonade from her lemonade truck, Cassidy’s Lemonade Stand. She has shared her story with local politicians and the Premier of Saskatchewan, showing them that there is a face to cystic fibrosis. Cassidy is now 11, and while I am so proud of her, I wish she didn’t have to go through this. I’m inspired by Cassidy, and I know other people are too. She does all of this while living with a disease that has a direct impact on her health and energy.

I’m constantly researching other countries and considering if moving somewhere that has greater access to medications for Cassidy is something we need to look at in the future, if a change doesn’t occur. It’s a really stressful thought process, and it can start playing games with my mind when I allow my thoughts go to a place of desperation. I think any parent would move mountains for their child if they could, and that has been one of the comments I have brought up with elected officials when meeting with them. I let them know that the current policies are putting parents into situations where they need to decide if they should sell their home and use their life savings in order to pay for these inaccessible medications.

When people share their stories about losing a loved one to cystic fibrosis and Cassidy overhears, it’s difficult to shelter her from the truth. Those days are hard, when the reality of CF comes to the forefront. On those days we just allow ourselves to lean in to the sadness and feel its impact on our lives. On other days, we make plans for the future, and we plan trips that we can get excited about.

We try to live our lives to the fullest, knowing that no one can be certain of their future. But one thing about the future we can be certain about is our ability to shape and influence it. Together, we need to tell our political leaders that the current health care system leaves many Canadians vulnerable and that’s unacceptable. We need to close the gaps, because each person that falls through, they are loved, and their lives matter.

I will do whatever it takes to give Cassidy a fighting chance. I hope you will too. You can help by signing Cystic Fibrosis Canada’s petition – tell candidates to fix this broken system.

Let’s do whatever it takes to help Cassidy and all children living with CF have less bad days and more days spent being kids.