The Holiday Season is here! This time of year brings joy and happiness to many, but also has its own set of challenges for those living with CF. It’s also the season for reflecting on what is most important to us and to look forward into the New Year. Some of our contributors shared their wishes for the holiday season and what they are most thankful for.
“Like anyone with a chronic illness, CF in particular, my wish for the holiday season is to avoid any major exacerbations that would land me in the hospital for IV antibiotics. No one likes to be stuck in the hospital during the holidays!
In June of 2017, I had the privilege of becoming a parent for the first time. Over the last two and a half years, my priorities and what I see as important have become very clear. The other day, as my son and I were finishing our lunch, we swayed back and forth together listening to his favourite Raffi song, with my arms wrapped snuggly around him.
It’s moments like these when all the daily stressors that fill my head stop and I realize what really matters in life and just how lucky I am.
Like anyone, the most important things in my life are my son, my entire family, the fact that I am here, breathing unrestricted, unattached to oxygen, feeding or IV tubes and I am able to be the kind of Mom that I always hoped I would be. Those are the things I refuse to take for granted and those are the things that matter most to me, especially around the holiday season.
One of the things I’m most thankful for right now is the fact that I was lucky enough to be eligible to take part in one of the new modulator drug trials. This new medication has been literally life-changing. What a privilege it is that I’m living with CF at a time when these new medications are on the horizon. Although there is still a huge amount of work that needs to be done so that all Canadians with CF can access these new medications, I’m incredibly grateful to be able to take part in this study for now.” – Kim Wood
“My personal wish for the holiday season is that Trikafta will be introduced to Canada so we can get the ball rolling ASAP.
I’m most thankful for the very breath I breathe and the fundraisers and scientists who helped keep it there.” – Timothy Vallillee
“Christmas is one of my favourite times of the year. I’m looking forward to having my daughter home from university in Ottawa, seeing my family and relaxing with friends.
This Christmas I am wishing for one thing in particular, an expansion of the criteria for the drug Orkambi. I have worked for many years to get this drug to those who need it. I hope to ring in the New Year knowing families and individuals who are depending on this drug for life sustaining therapy have access it.
Family is the most important thing to me. Five years ago someone gave me an extension on life with a double lung transplant. It gave me the chance to enjoy my Christmases, New Year’s Eves and celebrations. It is what I’m most thankful for.” – Rob Burtch
We also shared many thoughtful holiday wishes sent to us by our generous donors and online community via a Facebook Live on Thursday December 19. It was hosted by CFcommunity member Danielle Weil, mother of twin daughters, one of whom is living with CF, and CF Canada team member Jennifer Ouellette.
Watch the video below.
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