Our beautiful daughter Avery was born on 04/02/22 after a perfect pregnancy and smooth labour. For the first 24 hours, everything seemed fine – until it wasn’t. Suddenly, our world turned upside down. Avery was rushed to the Royal Women’s Randwick NICU, where she underwent her first bowel surgery for meconium ileus—a condition we had never even heard of as second-time parents. We were blindsided and terrified, but we had no idea this was just the beginning.

In her second week of life, Avery faced another bowel surgery, resulting in an ileostomy. Just five days later, doctors delivered the news that would change our lives forever – Avery was diagnosed with cystic fibrosis (CF). Another unfamiliar term, but one that would soon define our family’s daily reality. At six months old, her stoma was reversed, and for a while, things seemed to settle. But a few months later, DIOS (distal intestinal obstruction syndrome) became the next hurdle. Hospital stays became our new normal, but we clung to the hope that we were finally getting a handle on Avery’s condition.

That hope shattered in August 2024. Avery caught rhinovirus – a common cold for most kids, but for her, it triggered stage 2 respiratory failure. She was rushed to the ICU, where we held our breath, wondering if our baby would survive. But in the midst of the chaos, there was a glimmer of hope – Avery started Trikafta, the breakthrough CF medication we had long prayed for. When we finally brought her home, it felt like we had turned a corner.

But CF is relentless. In January 2025, Avery started showing signs of illness again. We thought it was just another virus, but within days, she was back in the hospital with another DIOS diagnosis. A week of laxatives and she was sent home – only to return two days later with the same symptoms. This time, it took two more weeks of treatment before we were discharged. Two days later, we were right back where we started.

Avery turned 3 on 04/02/2025. The hospital staff did everything they could to make it special, but there was no escaping the reality of CF. That same day, Avery was rushed into emergency surgery. She endured a grueling 10-hour procedure and received another stoma. Now, six weeks into another hospital admission with no clear end in sight, we’re left facing the harsh truth – this is the reality of life with CF.

This is why we fight every single day. Not just for Avery, but for all children with CF. We fight for more research, better treatments, and greater awareness – especially for expecting parents who deserve to know the risks. Avery’s journey is far from over, but her strength inspires us to keep going. We hope her story will inspire others to join the fight.