Allison Villalobos

Hi friends!!! I can’t believe it is almost WALK TIME already! Some of the things that happened in 2023 are things my overthinking/anxious brain NEVER could have come up with on its own.

365 days on Trikafta this year. I am the perfect Trikafta candidate. BUT ALSO - 114 days inpatient at UT Southwestern. 10 separate hospital stays. 140 days on IV medication at home to help come off the medications that create significant side effects every time I have to put the yucky *crap* in my body to stay at baseline. 254 days of spending my energy, time and mental drive to get back to BASELINE (not even back to feeling *good*) I’m tired – but I won’t stop fighting as long as you all continue to fight with me.    The most common question people ask me is, “are you not taking that new medicine anymore?“ The answer is yes – and it saved my life, but it hasn’t CHANGED my life as significantly as it has others. AND THAT IS OKAY. I am so happy that Trikafta improved the quality of so many lives. I’m so grateful that it saved my life, but I am also the perfect example of the fact that it was never a cure. I have spent so many years advocating and fundraising, and we all got to witness a true miracle. When I started realizing this wasn’t going to be MY miracle, I told Amy my main goal with fundraising now is to try and make people in my village aware that we cannot stop fighting until it’s COMPLETELY done for all of us. We have to feel blessed that we are living in the coolest time CF has ever seen, but just because we see so much progress and positivity – we have to also take a step back and realize…. we still have a lot of fighting to do!!

When people go through something hard or sad publicly – people come out of the woodwork to help out and it’s so cool to see who’s in your corner that you didn’t realize was hiding there. Do you know what is the best part about having CF…… ? I get to feel and see the love and support every single day. YALL ARE CARRYING ME TO OUR NEXT MIRACLE AND I LOVE AND APPRECIATE IT MORE THAN YOU KNOW.    

So here we are again – until CF stands for CURE FOUND , anything you can give will help! We have SEEN it helping and it WILL happen in my lifetime. ♥♥