“When my daughter Madi was eight months old, she had a cough. For some reason, the first thing I thought was, ‘Oh my god, I hope it’s not cystic fibrosis (CF).’ I have no idea why my mind went there, I knew so little about CF, but that was my fear. And then the diagnosis confirmed it.
All of a sudden we were dealing with daily therapy and medication, so many clinic appointments, and regular hospitalizations. I tried going back to work after my year of mat leave was up, but I only lasted two months. It was impossible to focus on work with a sick baby at home who needed me. I’m so grateful that we were in a financial situation where I could make that decision. So many families aren’t.
It wasn’t just caring for Madi’s health or being with her in the hospital, either. Advocating for her rights as a patient was a full-time job. We got her on a drug trial and it was miraculous, but then we realized the drug was still in negotiations and that we’d need to find a way to pay for it after the trial ended. How can any family come up with $350,000 a year, every year?
We had to advocate to the insurance company to cover part of it. We had to advocate to the manufacturer to cover another part. We had to go down to Queen’s Park and make noise. And we had to fundraise to cover the rest. And, though our community was so giving, there comes a point where that level of fundraising is unsustainable. It took close to two years, but we finally got coverage for this treatment negotiated for 118 people across Canada. We had a huge celebration, but we knew the next fight was just around the corner, because it never stops.
Madi is 20 now, and she’s doing so well. She’s got a successful photography business. She’s going to school. She’s fostering animals all the time. We’ve had a lot of wins, but at this point we know that each victory is temporary. Until the system changes, there will always be another fight. In between our own battles, we’re now fighting for other people with CF and other rare diseases.
“We knew the next fight was just around the corner, because it never stops.”
This summer we’re looking forward to dropping our shoulders a little bit and spending more time trail riding together. We’re excited for a sense of normalcy. Honestly, that’s all we’ve ever wanted.”
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