Our Love for Lena Story
Sarah Horne
Fundraising for Milwaukee Great Strides 2026
Sarah Horne
Lena was just 10 days old when I received the call from her pediatrician. “We got some unexpected results from her newborn screening. She’s positive for Cystic Fibrosis.” Cystic fibrosis is a genetic condition that affects the lungs and digestive system causing the body to produce thick, sticky mucus that can lead to severe respiratory and digestive issues. It’s chronic and progressive with no cure at this time.
As a first-time mom who left the hospital with a seemingly healthy baby in the middle of a pandemic, I had no idea what any of this meant. It felt like our world had been turned upside down. How could this sweet little baby in my arms be plagued by such a disease? There was so much uncertainty, so many questions, all challenging our hopes, dreams, and expectations.
Two days after that call, we were down at Children’s Hospital in Milwaukee meeting with our CF team for the very first time. We faced a barrage of medical terms. Terms like “life-shortening,” “mucus build-up,” “chronic lung infections.” There were tests and procedures, each new piece of information a reminder of the challenges ahead.
From that day forward, our family’s daily routine changed. Medications, airway clearance, enzymes, breathing treatments—these became as normal to us as bedtime stories and brushing teeth. There are moments of triumph when new treatments are approved, and there are times when setbacks remind us of the fragility of our hope.
One of the crazy things about Cystic Fibrosis is that there are over 2,000 known mutations but the most common one is a F508del. Lena inherited two copies of this mutation, one from Kelly and one from me, which is then commonly referred to as Double Delta F508. The benefit to her having this particular mutation is that she is eligible for most CFTR modulator therapies like Trikafta, Orkambi, and the newest Alyftrek. These modulators go in at a cellular level and address the underlying cause of the disease rather than just the symptoms, making them significant advancements in treatment. Lena was able to start Trikafta in August 2023 shortly after it was approved for her age group but we had to navigate some less than favorable side effects early on. Fortunately, we were able to work with her care team to adjust the dosage without having to pull her off it completely and she has now been back on the full dose and tolerating well.
Amid the challenges, there are still extraordinary moments of resiliency and joy. Lena teaches us daily about strength, courage, and the importance of living in each moment. I am grateful to say that CF does not define her and that she is a happy, healthy 5 year old girl who loves to hit up Culver's every chance she can, sing at the top of her lungs, eat alllll the snacks, swim, and do gymnastics.
As we celebrate the small victories—healthy lung function, a percent improvement on the growth chart, the progress in therapies – Each one is a reminder of the incredible strength within our family and just how far fundraising dollars have come in the fight to find a cure for CF.
But it's important to note that not all people with CF can tolerate these “miracle” treatments even if they have the right mutations. Others simply don’t have the right mutations for these treatments to work. This is why we can’t stop fighting for ALL people with Cystic Fibrosis.
Because every year, science moves a little further. New treatments emerge. Gene therapy research advances. Life expectancy climbs. And with every step forward, I dare to dream, WE dare to dream—not just of a longer life for Lena, but of a fuller one. One with less suffering, fewer limitations, and more freedom.
That’s why events like this matter. Because behind every fundraiser is a parent or loved one praying for one more healthy day. Because someday, I hope to say: We did it. CF finally stands for Cure Found.
As a first-time mom who left the hospital with a seemingly healthy baby in the middle of a pandemic, I had no idea what any of this meant. It felt like our world had been turned upside down. How could this sweet little baby in my arms be plagued by such a disease? There was so much uncertainty, so many questions, all challenging our hopes, dreams, and expectations.
Two days after that call, we were down at Children’s Hospital in Milwaukee meeting with our CF team for the very first time. We faced a barrage of medical terms. Terms like “life-shortening,” “mucus build-up,” “chronic lung infections.” There were tests and procedures, each new piece of information a reminder of the challenges ahead.
From that day forward, our family’s daily routine changed. Medications, airway clearance, enzymes, breathing treatments—these became as normal to us as bedtime stories and brushing teeth. There are moments of triumph when new treatments are approved, and there are times when setbacks remind us of the fragility of our hope.
One of the crazy things about Cystic Fibrosis is that there are over 2,000 known mutations but the most common one is a F508del. Lena inherited two copies of this mutation, one from Kelly and one from me, which is then commonly referred to as Double Delta F508. The benefit to her having this particular mutation is that she is eligible for most CFTR modulator therapies like Trikafta, Orkambi, and the newest Alyftrek. These modulators go in at a cellular level and address the underlying cause of the disease rather than just the symptoms, making them significant advancements in treatment. Lena was able to start Trikafta in August 2023 shortly after it was approved for her age group but we had to navigate some less than favorable side effects early on. Fortunately, we were able to work with her care team to adjust the dosage without having to pull her off it completely and she has now been back on the full dose and tolerating well.
Amid the challenges, there are still extraordinary moments of resiliency and joy. Lena teaches us daily about strength, courage, and the importance of living in each moment. I am grateful to say that CF does not define her and that she is a happy, healthy 5 year old girl who loves to hit up Culver's every chance she can, sing at the top of her lungs, eat alllll the snacks, swim, and do gymnastics.
As we celebrate the small victories—healthy lung function, a percent improvement on the growth chart, the progress in therapies – Each one is a reminder of the incredible strength within our family and just how far fundraising dollars have come in the fight to find a cure for CF.
But it's important to note that not all people with CF can tolerate these “miracle” treatments even if they have the right mutations. Others simply don’t have the right mutations for these treatments to work. This is why we can’t stop fighting for ALL people with Cystic Fibrosis.
Because every year, science moves a little further. New treatments emerge. Gene therapy research advances. Life expectancy climbs. And with every step forward, I dare to dream, WE dare to dream—not just of a longer life for Lena, but of a fuller one. One with less suffering, fewer limitations, and more freedom.
That’s why events like this matter. Because behind every fundraiser is a parent or loved one praying for one more healthy day. Because someday, I hope to say: We did it. CF finally stands for Cure Found.
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