How one family’s fear turned into hope for the future
FEBRUARY 21, 2023
My husband Warren and I live in Manitoba with our three children: Lucas (12), Oliviah (8) and Wyatt (7). I have a passion for health and wellness and I’m currently pursuing an education in holistic nutrition. The kids keep us super busy with extra curriculars–Wyatt and Lucas both play hockey and Oliviah is in gymnastics.
When Wyatt was just two weeks old, we got a call from our pediatrician. She let us know that his newborn screening had come back abnormal and that it could indicate cystic fibrosis (CF). We knew absolutely nothing about CF and spent the evening researching. The information we found was devastating but we held onto hope that the results were wrong. Wyatt was healthy and growing so we just didn’t think it was possible that he could have this disease. The following day we got called to our children’s hospital cystic fibrosis clinic where the doctor confirmed that Wyatt had CF. We were extremely upset and fearful for his future. This wasn’t a broken bone that could be fixed, it was a lifelong illness that would impact more areas of his life than we could even imagine.
Immediately upon diagnosis he was put on enzymes and a special multivitamin, and we realized quickly that this disease would impact many different areas of his life. Daily physio became a part of our routine.
Wyatt’s health has had many ups and downs, and his first years of life weren’t easy. Shortly after diagnosis we were told he had a collapsed lung from a bad cold. He was chronically sick, often going on back-to-back rounds of oral antibiotics. He also had a hospital stay at only a year and half. There were constant reminders that health is fragile and can change in an instant, one infection can result in permanent damage to the lungs. Wyatt has also had to work hard to keep his weight at a healthy number. When he was born, he was in the 90th percentile, by a year old he had dropped to the 15th percentile in weight. We have worked to keep his weight at the 50th percentile, while still promoting healthy nutrition.
At first, we were apprehensive about being involved with the CF community and Cystic Fibrosis Canada, as we feared hearing the upsetting stories of people living with this disease. Despite that, we attended our first Walk to Make Cystic Fibrosis History in 2016, when Wyatt was only a few months old. It wasn’t until Wyatt was about two years old that I started to engage more with this amazing community. There was so much hope and positivity. This is where we first learned about disease modulators and all the exciting medications that were on the way for cystic fibrosis. Instead of hearing bad stories about CF, we were given so much hope for the future.
I was so excited when I heard Trikafta was in Canada. We had been advocating for years for it to be approved and funded so this day was something we were waiting for. I know many local adults with CF who couldn’t wait much longer for this medication to arrive. This is what we had fought relentlessly for. We celebrated this victory and then focused on getting Trikafta for the 6+ age group. When that day came it felt surreal. This was the hope we had been holding onto since he was diagnosed. A medication that would allow him to live a full, healthy life.
Wyatt started Trikafta in October of 2022 and has been thriving. Within a week or two of starting, his cough went away. He even stopped coughing during his treatments. When he gets a cold, he’s been able to get rid of it without the use of antibiotics. He is able to spend more time playing and doing things he enjoys, instead of needing extra treatments to get rid of the mucous.
When he started taking Trikafta, it was the first time I could just take a deep breath and not worry about his future. It gives him the chance at a normal future. A life where he can do all that he wants. He can play sports, graduate, pursue a career, get married and have a family, whatever he wishes for his life. He can spend so much more time doing the things he enjoys instead of having to worry about his health. Trikafta just gives us so much hope that he will have a great future, which is something we didn’t have when he was first diagnosed.
There are so many people living with this disease that are thriving because of generous supporters. Trikafta is a gift for so many people living with CF but it is not something that everyone can benefit from. It is imperative that we keep fundraising until every single person living with cystic fibrosis has a medication that can give them the same quality of life as those on Trikafta. Ultimately, we will not stop fundraising until there is a cure, but in the meantime, we want to ensure that everyone can have the same quality of life that Wyatt has. We want everyone to have the same hope for the future that we have for Wyatt.