A Story of Resilience: Emmy-Lu’s Journey at Four

Many of you have followed the story of our sweet Emmy-Lu, who was diagnosed with cystic fibrosis at just two weeks old. As we look back over the last four years, it’s been a rollercoaster—a journey defined by hope, grit, and an unbreakable bond.

The early days of breathing treatments and enzymes felt insurmountable, but they’ve become the rhythm of our lives. Emma will turn 4 years old in May and while she is a firecracker, the daily fight continues.

We have some incredible news to share regarding her progress. Emmy-Lu has been on Trikafta, a groundbreaking "modulator" medication. For many with CF, salt levels are a major health indicator; because of a genetic mutation, salt can’t move to the surface of the cells, causing mucus to become thick and sticky. Trikafta actually works at the cellular level to help salt flow correctly. Since starting it, we’ve seen a significant improvement in Emmy’s salt levels! This means her body is better at keeping that mucus thin, which has been a huge part of keeping her lungs clear and her body healthy this past year.

While Trikafta is a miracle of science, we are still navigating challenges, especially with her weight. Emmy remains on an appetite stimulant because, for a CF warrior, every ounce of body fat is armor against the infections that try to wear her down.

So, why are we still walking?

Because while Trikafta is helping Emmy-Lu stay healthy today, it isn't a cure. The Cystic Fibrosis Foundation (CFF) is the reason this drug exists, and they are the lifeline funding the science for the next breakthrough—to ensure every person with CF has a treatment that works for them.

The CFF motto is “Adding Tomorrows.” For us, that means more birthdays, more school days, and more time watching Emmy-Lu defy the odds.

Will you help us cross the finish line?

By donating to my walk, you are fueling the research to ensure that "life-shortening" is a term of the past. Let’s make sure Emmy-Lu—and everyone fighting CF—gets the long, healthy life they deserve.