Lulu's Story: A Fighter, a Thriving Kid, and a Reason to Keep Striding

Our daughter Lulu is one of the brightest lights in our world-a silly, strong-willed, joyful little girl who lights up every room she enters. She also happens to have cystic fibrosis (CF), a progressive genetic disease that affects her lungs, pancreas, digestive system, and every organ in her body. CF is not something you outgrow or recover from; it is with her for life. But Lulu? She refuses to let it define her.

From the very beginning, CF made its presence known. Lulu spent months in the NICU after birth. She endured multiple surgeries, battled failure to thrive, faced repeated hospital stays, lived with feeding tubes, and suffered serious gastrointestinal distress that left her tiny body fighting just to grow. Those early days were terrifying and exhausting, filled with beeping monitors, endless tests, and the constant fear that we might lose her. Yet through every setback, Lulu showed us her incredible fighting spirit.

Fast-forward to today, and Lulu is thriving in ways we once only dreamed about. About a year ago she started taking Trikafta, the groundbreaking "miracle drug" that has transformed life for so many with CF. Almost overnight we watched her energy soar, her lungs clear, and her appetite appear with a vengeance. She's running, playing, laughing, and doing all the things kids her age should do. For that, we are endlessly grateful-CF treatments have truly come a long way.

But even with this miracle medication, the fight is far from over.

Trikafta is not a cure. Lulu still lives with a daily mountain of preventative care: enzymes, vitamins, and supplements every single day, plus rigorous chest physical therapy to keep her lungs healthy. And Trikafta itself has brought its own challenges. In the past year Lulu has suffered from serious, painful styes-red, swollen, incredibly tender infections around her eyes that have caused real discomfort and required medical attention. Her doctors and our family reported these side effects to Vertex Pharmaceuticals, and they have since been officially added to the medication's known side effects list. We share this not to complain, but to be honest: even the best treatments come with burdens, and Lulu carries them with more grace than most adults could manage.

CF may be progressive, but so is Lulu's determination. She doesn't complain about the breathing treatments that take up part of everyday. She doesn't let the handfuls of pills slow her down. She just keeps going-because that's who she is.

That's why we walk in Great Strides every year with Lulu's League. Because while CF research has given us Trikafta and so many other advances, there is still so much work left to do. We need better treatments with fewer side effects. We need a cure. And every dollar raised in Lulu's name goes straight to the Cystic Fibrosis Foundation to fund the next breakthroughs that will change even more lives.

If Lulu's story touches your heart, please consider joining our fight. Your donation-big or small-made in honor of Lulu's League means more research, more hope, and more tomorrows for kids like our daughter who refuse to let CF steal their joy.

Thank you for believing in Lulu, for believing in progress, and for helping us turn today's challenges into tomorrow's victories.

With gratitude and big smiles from Lulu,

Her proud family & Team Lulu's League