My name is Jade. I have 2 older sisters, 2 younger brothers, and an amazing boyfriend of almost 8 years, Ben. I love to cook (and eat), I love Wednesday night Bingo, and having my family over for dinner. I also happen to live with cystic fibrosis (CF).
I was diagnosed at 6 months old via sweat test. I later had bloodwork done to confirm my genetic mutations as DD508. My parents never made CF to be a bad thing. They didn’t go crazy with restrictions or get over-protective. I felt like a normal kid, aside from the daily mask and physio sessions. Those never felt like a bad thing because it was made to feel like special 1-on-1 time with whichever parent was doing my treatments with me.
It wasn’t until I became a teenager and began getting sick more often that I learned how serious this disease was. It was hard to grasp at first, but I became determined to know everything about my health so I never felt like I had unanswered questions. It helped to relieve a lot of anxiety when I asked questions and my doctors explained everything. It also helped me become a strong advocate for myself, as well as other CF patients and their families.
I have been blessed with a village of people who have supported me through the highs and lows of this disease, and with life in general. I am lucky to be able to count on several people around me if Ben and I ever need anything – from running to the store, driving me to an appointment if Ben isn’t able to take me, or visiting me when I’m in the hospital. These people are always a phone call away.
In terms of why I participate in the Walk to Make Cystic Fibrosis History, I am an example of what this type of fundraiser can do! Thanks to the years of fundraising, research, trials, testing, and breakthroughs, I have been able to live far past what the doctors predicted my life expectancy to be back when I was diagnosed in 1994. I am thankful every day for each and every penny it’s taken to get to this point with the CF advancements, and I am so excited to see what the future holds.
If I had to give fundraising advice to a new walk participant, it would be to get excited and proud of what you’re doing. Tell everyone what you’re doing and why. This year, for the Walk to Make Cystic Fibrosis History: Virtual Challenge, I’ve committed to doing at least 30 minutes of exercise every day. This is extra beneficial because it will keep my lungs and body healthy while I wait to be listed for my second double lung transplant. The Virtual Challenge is meant to be a fun, exciting, and informative event. Be real about CF and the seriousness of the disease, but be sure to shine a positive light on how far we’ve come. Not everyone will be able to donate, but do not be discouraged by that. Contact your friends, family, neighbours, and ask them to support you!
CF has made me laugh louder, cry harder, love stronger, forgive easier, and push myself to live every day like it’s my last. Some of my proudest moments, scariest moments and determined mindsets have happened because of CF. As much as I’d love to believe I’d be better without having CF, I don’t believe I would have the fight and motivation that I do without it. It makes me want more out of life and out of people. I set high expectations, but that’s because I believe everyone is capable of greatness. Every day that you wake up is a day to make a difference, and that’s a gift I don’t plan on wasting.
For the past 15 years, the CF community has come together every year at the Walk to Make Cystic Fibrosis History, united in the pursuit of a cure. This year, due to the unprecedented global situation caused by COVID-19, the walk has been changed to a virtual format in an effort to keep our community safe.
This year, we invite you to #WalkYourWay4CF. For the Walk to Make Cystic Fibrosis History: Virtual Challenge, you can complete your walk your way, on your own time until the end of Cystic Fibrosis Awareness Month (May 31st).
We also would like to thank our National partner, Kin Canada, and sponsor of the Walk to Make CF History, Vertex Pharmaceuticals, for their generous support.
For more information on the Walk to Make Cystic Fibrosis History: Virtual Challenge, or to make a donation, please visit our website.Learn more