My daughter, Léonie, is a ray of sunshine. She wakes up happy and goes to sleep happy. She has an older brother who is almost five years old and keeps her on her toes. She doesn’t let others walk all over her. At two years old, Léonie has tremendous interpersonal skills and won’t hesitate to go over and talk to people that she doesn’t know (sometimes to the dismay of my wife and I). She loves to sing and dance — even during her treatments.
Léonie was diagnosed with cystic fibrosis (CF) when she was a month old, after a stay in intensive care for a respiratory syncytial virus that wouldn’t go away. Léonie is too young to understand what her condition implies, but there is no doubt that she cannot do everything that everyone else does. She can’t go play outside with her brother when she comes home from daycare because she has to have her treatments done. She can’t eat everything she would like to eat because of her maximum daily dose of enzymes. Despite all of this, we do everything we can to make her life as normal as possible.
Our family has an amazing support system. We ask for help, and it appears like magic. We are very lucky in that regard. Léonie is very close to her four grandparents (both emotionally and geographically), and we could not have had a better situation with respect to daycare. As far as the community is concerned, I belong to a number of social media groups for parents of CF children. With that said, it turns out that only someone who is living in the same situation can really understand that it’s like.
In terms of why my family and I participate in the Walk to Make Cystic Fibrosis History every year, we have seen firsthand what fundraising can do. From the clinics, to the current medical breakthroughs, and support from Cystic Fibrosis Canada, there is so much that we are thankful for. We think it is important to do our part for other CF families in Canada, and to pay it forward for those who will come after us.
Although the Walk has been changed to a virtual format this year, get your friends and family involved! Instead of asking colleagues to make a donation, ask them to participate in the Walk to Make Cystic Fibrosis: Virtual Challenge. They will then do their own fundraising, and you will expand the scope of your action. People are willing to give. Don’t hesitate to ask them. Every year, I am surprised by the support that I receive from people I don’t know at all.
Since the Walk is a national event, I really have the impression that I am participating in something big. In the weeks that precede it, I speak to other CF parents from coast to coast. People adopt challenges and encourage each other in our fundraising. For the Virtual Challenge this year, I will put Léonie’s makeup skills to the test and have her give me a makeover. After I’m all done up, I will then go for a 15 km run! The Walk is the first CF event that I took part in after Léonie’s diagnosis. It was where I understood that my family and I are not alone in this battle.
I encourage everyone to participate in the Walk to Make Cystic Fibrosis History: Virtual Challenge because the fundraising dollars go so far. CF clinics make the biggest contribution to improving the quality of life for children like Léonie. You may go faster alone, but we will go further together.
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).
For more information on the Walk to Make Cystic Fibrosis History: Virtual Challenge, or to make a donation, please visit our website.Learn More