Full Circle: Olivia’s Bright Spring and the Power of Progress
Full Circle: Olivia’s Bright Spring and the Power of Progress
April 21, 2025
This last week has been full of emotion, gratitude, and those little moments that remind me we’re doing something right.
Egg Drop Growth + Olivia’s Junior Champion Moment
Last Tuesday, Olivia and I delivered 262 Easter eggs to Children’s Mercy Hospital. That number still stuns me—because just a few years ago, we started this egg donation tradition with 95 eggs. Then 150. And now, 262. Each one lovingly prepped, filled, and packaged thanks to your support through the Salty Jeans Egg Drop.
This year was extra special. Olivia was able to come with me for the very first time to deliver the eggs herself. Watching her stand proudly beside those bags—so many, in fact, we had to use bigger totes!—was just one of those full-heart moments I’ll remember forever.
Even better? Olivia officially became a Junior Champion for Children’s Mercy. She earned a keychain with special charms for each donation and season, including a “Toy” charm for the little surprises inside the eggs. It’s a celebration of giving, of resilience, and of recognizing the ways she is already making an impact in this world—at just 7 years old.
But the day didn’t stop there.
Clinic Visit & Treatment Plan Updates
Later that afternoon, we headed to her quarterly CF appointment. And while CF clinic days used to be full of tears and tension, this one felt different, it felt lighter.
For context, Olivia’s journey with cystic fibrosis hasn’t been easy. Since 18 months old, she’s followed a rigorous routine of medications, treatments, and frequent clinic visits. She’s braved throat swabs, lab draws, chest X-rays, breathing treatments, and more. And when she started the Trikafta modulator back in 2022, we were hopeful… until we saw the mental and emotional toll it took.
Over the next two years, we tried everything—off, on, half doses—trying to strike a balance between benefits and side effects. Then, at the end of 2024, a new modulator called Alyftrek became available. Olivia was approved, she started taking it, and suddenly… things started to shift.
Her body is responding so well. Her lung function is phenomenal, her mental health is improving, and last week—thanks to this new treatment—her care team made changes that reduce her daily meds and treatments. She even handled a blood draw in 15 minutes. Just a few months ago, that same task would have taken nearly an hour, tears, a child life specialist, and physical restraint.
Reflections + What’s Ahead
It’s impossible to overstate what this means for her and for our family. The road has been long, but right now I feel like I can take a deep breath, a real deep one. We’re in a season of hope and I don’t take it for granted.
The science that created Alyftrek, the approvals that got it to Olivia, and the support we’ve received every step of the way—it all connects back to the work of the Cystic Fibrosis Foundation and the community that rallies with us through our Salty Jean fundraisers and events.
So if you’ve donated to our team, participated in our fundraiser events, walked with us at Great Strides, hiked with us at the Xtreme Hike, or simply cheered from afar—thank you. You’re part of Olivia’s story. And I hope you can feel the joy in every one of our posts.
We are so grateful.