On March 16, 2022, we learned that our daughter Cameron has cystic fibrosis. She was one day old. Though the formal diagnosis didn’t come for another five weeks, we knew Cam had it because she was born with an intestinal blockage that is almost always indicative of CF. A compassionate surgeon broke the news to Alex and me, who were sick with worry after our hours-old baby had been taken by ambulance to UNC for more advanced care. While we waited for Cam to be returned to the PICU after surgery, we began frantically Googling. We sat in stunned silence as the harsh realities of this disease washed over us. Progressive lung disease. Damage to the pancreas and liver. Severe GI complications. Malnutrition and failure to thrive. Recurrent respiratory infections and frequent hospitalizations. When we got to life expectancy, we put down our phones.
That night was one of the most difficult of our lives. We cried and cradled our sweet baby as she recovered from surgery. The next morning, we were paid a visit by UNC’s team of CF doctors. The first thing they told us was to stay off Google. Why? Because the prognosis for children born with CF had changed so drastically for the better in the last few years. They gave us an honest accounting of the realities of life with CF and the hard work that would be required to keep Cam as healthy as possible. They assured us that we were now part of a small but mighty community and that we would not navigate this alone. They ended the visit by giving us hope.
Over the past year, with the help of Cam's incredible care team, we have learned as much as we can about CF. We have watched in amazement as our strong, resilient girl has smiled her way through two major surgeries, four hospital admissions, countless meds and physical therapy sessions, and more pokes and procedures than most of us endure in a lifetime. We have read about the history of this disease, the suffering it has caused, and the many scientists and clinicians who have worked to change that. We have learned about the life-changing new CFTR modulator drugs that address the underlying cause of the disease and have dramatically improved the prognosis for people living with CF. We have learned that these and the many other advances in CF are thanks in large part to the tireless efforts of parents who fundraised and lobbied to bring us closer to a cure.
This May, we are picking up that torch and participating in our first Great Strides walk to benefit the Cystic Fibrosis Foundation. The Foundation is the engine driving CF research forward. In addition to their relentless pursuit of a cure, they provide incredible support to patients and families affected by CF. We are humbled to follow in the footsteps of the parents who came before us, whose children did not have access to today’s therapies. We are committed to doing everything in our power to ensure Cameron and others with CF have the bright future they deserve.
Thank you for reading Cam's story and considering supporting our cause. We are also grateful for any prayers and positive vibes you can send to our sweet girl. She has brought immeasurable joy to our lives in her first year, and we can’t wait to see her continue to grow and thrive. To borrow a phrase from a seasoned CF parent: Cam has CF, but it doesn’t have her!
About CF
Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. They are moms, dads, sisters, brothers, daughters, sons, and friends who face the sobering prospect of a shortened lifespan. We walk for them.
Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.
You can support us!
By supporting our fundraising goal, you have an opportunity to be part of ending this disease. Please consider joining us to help make medical history.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.