Our daughter Lydia arrived on January 27, 2026- her birth bookended by an ice storm and 9 inches of snow! We eagerly brought her home and settled in to the sleepless yet blissful newborn phase.

A few days after our first pediatrician visit, we received a phone call from our pediatrician, who explained that Lydia's newborn screening flagged elevated IRT protein levels. This  positive screen required further testing to determine presence or absence of genetic mutations that can cause cystic fibrosis (CF). We were shocked to learn that Lydia possesses two gene variants that cause CF, and she was already experiencing some complications from the disease.

CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.

We were immediately overwhelmed with fear for our daughter's wellbeing both in the present and future, as CF is a serious and lifelong disease. We grieved the way that this news seemed to steal the joy we were supposed to feel during our first weeks at home with our baby girl.

Lydia's first visit at the CF clinic at Atrium was simultaneously overwhelming and clarifying. We met with several members of the team who each offered us greater understanding of the potential impact of this disease and the necessary intervention. We were struck by our team's encouragement that treatment for CF has drastically improved in the past decade and is continuing to evolve. We left feeling equipped with knowledge and actionable steps for Lydia's treatment. Most salient of all, we left feeling hopeful. It was clear to us that our daughter's health is in good hands and we have every reason to hope that the treatment will benefit her. This was the greatest gift to us, to know that there is intervention that can help our precious daughter now and throughout her life.

Having immersed ourselves a little more into the CF community since Lydia's diagnosis, it is clear to us that the strides made in treatment and health outcomes for individuals with CF is due to the commitment to funding the science and research enabling the development of new treatments.

We hope for a world without cystic fibrosis. We hope that our daughter will one day not need intervention to treat her symptoms. We hope that she and many others would not struggle with symptoms of this disease. Team Mighty Miss Lydia is walking to honor our daughter Lydia, and the strength and resilience that she doesn't yet know she possesses. We are walking to commit ourselves to not just imagining, but making possible, a cure for cystic fibrosis.

There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality.

Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.

Will you help us end cystic fibrosis?

By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.

We appreciate your support!

Laura and Matt McCall