A Story of Hope: Emmy-Lu’s Journey with Cystic Fibrosis

Many of you may know my sweet Emmy-Lu, who was diagnosed with cystic fibrosis when she was just two weeks old. Looking back over the past three years, it’s been nothing short of a rollercoaster ride—a journey filled with hope, challenges, and an unbreakable bond.

The first year of Emmy’s life was overwhelming in so many ways. Having a newborn is never easy, but adding breathing treatments, enzyme supplements, and special vitamins to our daily routine felt like an insurmountable challenge. It was hard to imagine a “normal” day, but over time, the treatments became just another part of our lives. We learned to adapt and persevere, knowing each step was necessary for our little girl.

At two years old, we were thrilled when Emmy was approved for a groundbreaking medication—a drug that has already transformed the lives of so many cystic fibrosis patients. We held onto hope as we watched her, waiting to see signs of improvement. After being on the medication for 7-8 months, we took a step back to assess her progress, and unfortunately, there was no noticeable improvement in her symptoms. But we remain hopeful that with time, the medication will start to show its benefits.

One of our biggest challenges has been helping Emmy gain weight. She struggles to maintain a healthy weight, so she is currently on an appetite stimulant to help encourage her to eat more. The doctors are especially focused on her weight because having enough body fat is crucial, especially if she gets sick and needs to fight off infections.

So why am I sharing all of this with you today? The truth is, without the Cystic Fibrosis Foundation (CFF), we wouldn’t be where we are today. The support, research, and breakthroughs they fund have been a lifeline for us, and for so many families. The foundation works tirelessly to support the development of new medications, like the one Emmy is currently on, that give children like her a better chance at a future filled with more tomorrows.

One of the CFF’s mottos is “Adding Tomorrows.” For us, this couldn’t be more meaningful. We are so grateful for every tomorrow we have with Emmy, and we are fighting to make sure there are many more to come.

Your generous contributions to the Cystic Fibrosis Foundation help make all of this possible—helping fund the research, development, and support that bring hope to families like ours. Every dollar brings us one step closer to a cure and ensures that children like Emmy will have the chance to live longer, healthier lives.

Thank you for being part of our journey. Together, we can help make a difference.