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Weekly Wins
After learning that this was a recurring topic on another rare disease forum, I thought it would be fun to bring it here as well. I want to talk about wins – big, small, and everything in between. It can sometimes be hard to share and celebrate our accomplishments or strokes of good luck, but I believe we are all deserving of a little celebration.
So, let’s celebrate together, shall we?
Tell me, in the past week or so, what is a “win” you’ve experienced? Related to CF or other areas of life; big or small; silly or profound. Tell me something that you’ve been blessed with, a thing you’re kicking butt at, or an accomplishment you’re proud of.
My personal win this week? After years of wanting to have chickens again (some of you may remember that my youth was spent on a small farm), a few weeks ago, we finally brought some baby chicks home. After a couple losses in the first few days, the babies are now thriving and growing faster than I imagined they could. We’ve begun building the outdoor coop and run they’ll be transferred to once they are fully feathered. Fulfilling this little dream of mine, and physically being able to work outside alongside my partner, feels like a huge win!
What about you?
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2 Replies
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My son is a 37 old autistic person suffering from CF. He is one out of about 600 people in the US with both of these conditions. His CFTR mutations are rare and rarer. The most common is G85E; one of 584 in the US. The less common one is 2732insA; one of 6 in the US. I believe he is the only person in the world with this combination. I thought that there would never be a CF medication that could have the effect that Trifakta has on patients. My entire family was overwhelmed that Trifakta has been shown to be effective on patients with the G85E mutation. He has been taking Trifakta for just under a month. Every time Tim undergoes his chest compression therapy he sneezes powerfully and out comes a lot of mucous. As time goes by hw sneezes less and less and he hardly ever coughs. My family and I are overjoyed!
Ron Cubalchini
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Ron, this nearly has me in tears! I can only imagine your family’s excitement over this. Indeed, this is a gigantic win! Woohoo!🎉 Thank you so much for sharing this.
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