Holding on to Hope for Lyvia

Before Birth: Facing the Possibility of CF 

As a mother, hearing that your child has cystic fibrosis (CF) is never easy, even when you know the chances are high. Both Jonathan and Carolane, Lyvia's parents, are carriers of the cystic fibrosis gene, so they understood there was a greater likelihood that their baby would be born with CF. Carolane learned at 34 weeks pregnant that her daughter would likely have CF, the diagnosis was confirmed through newborn screening shortly after Lyvia was born. Lyvia is the only person in their family living with cystic fibrosis and the news came as a shock for Jonathan and Carolane. Faced with this reality, Carolane discovered strengths she never knew she had. The superpowers she developed as Lyvia's mother emerged through difficult moments and continue to guide her every day. 

The Early Days: Learning Together 

The diagnosis only strengthened their family's bond. Together, they learned, adapted, and supported one another as they embraced this new reality. Their family is incredibly grateful that cystic fibrosis is included in newborn screening, as it allowed them to receive answers early and begin accessing the care and support Lyvia needed from the very start. 

Two Weeks Old: Starting Treatment 

The first year of raising a child with CF was filled with learning and adjustment. From understanding how weather conditions can affect symptoms to determining which products, activities, and routines best support her health, every decision brought new considerations. 

Lyvia began taking enzymes when she was just over two weeks old, making it a natural part of her daily routine from the very beginning. Her family looks forward to the day when she's old enough to access a modulator therapy and experience the impact it could have on her future. 

The First Year: Finding Support 

It was important to them as parents to learn as much as they could about the disease, and the educational sessions offered through their CF clinic provided valuable guidance while navigating life with cystic fibrosis. 

During some of their most challenging moments, the care team at their clinic reminded them that they were not alone. The team's knowledge, compassion, and support gave Lyvia's family the confidence to move forward and helped them feel truly surrounded by people who cared. 

Today: A Future Filled with Hope 

Today, the future of cystic fibrosis is filled with hope that Lyvia will never have to place limits on her dreams. Donor support drives meaningful progress. Your support helped make newborn screening possible, giving Lyvia the best possible start. That same support transforms lives and opens up new possibilities every day. But we're still waiting for a cure, and that's what mothers like Carolane continue to hope for. 

With every breakthrough, progress continues to build. Raising awareness about cystic fibrosis and sharing its realities helps deepen understanding and strengthen support for the community. As a mother, Carolane believes that one day children living with cystic fibrosis will be able to live without limits. 

The challenges are real, but so is the joy. Lyvia is happy, thriving, and living life to the fullest, and that gives her family confidence in all that's still to come.