Aubrey's Eagles

As you may already know, our daughter Aubrey was diagnosed with Cystic Fibrosis (CF) just one week after her birth, which came as a complete shock to both Brittany and me. At that moment, the world seemed to shift beneath our feet. We were first-time parents, embarking on a journey filled with the joy and challenges of parenthood, but this unexpected diagnosis of a chronic, life-threatening disease was nothing short of devastating.

Initially, we had little knowledge of Cystic Fibrosis. The realization that our beloved daughter was facing such a formidable health condition left us reeling. Amid the adjustments that parenthood brings, we understood that our concept of “normal” was about to undergo a profound transformation. One thing was clear: we were determined to do everything within our power to ensure Aubrey’s well-being and provide her with as normal a life as possible. It’s important to note that we would not be on this path without the incredible support we have received from our family and friends, and for that, we are endlessly grateful.

For those who may not be familiar with Cystic Fibrosis, it is a genetic, chronic, and life-threatening disease that affects approximately 40,000 Americans and 90,000 people worldwide. Aubrey carries the most common CF mutation, homozygous DF508, which primarily manifests as respiratory challenges due to the accumulation of excess mucus in the lungs. This surplus mucus also predisposes her to frequent lung infections resulting from bacterial buildup. Furthermore, CF causes pancreatic insufficiency, impairing her ability to digest food properly. In recent times, she has also been grappling with gastrointestinal issues, leading to difficulties in gaining weight as expected, around her first birthday she had a feeding tube inserted into her belly so she can receive overnight feeds.

Presently, there is no known cure for CF. However, the Cystic Fibrosis Foundation (CFF) is tirelessly dedicated to changing that. They are not only working relentlessly toward finding a cure but also striving to enhance the quality of life for those living with CF. It’s worth noting that the CFF relies solely on funding from private donors, setting it apart from many larger foundations that receive government grants. To offer some perspective on the progress made, as of 2015, the median predicted survival age for individuals with CF is nearing 40, a remarkable improvement from the 1950s when reaching the age of one was considered fortunate. However, we believe that even 40 years is too short a life, and it is unacceptable. In 2015, the FDA approved a dual combination drug specifically designed to address the root cause of CF in individuals with Aubrey’s mutation, known as CFTR, representing a significant step forward in treatment. In 2019 the FDA approved the first triple combination therapy available to treat patients with the most common cystic fibrosis mutation. Trikafta is approved for patients 12 years and older with cystic fibrosis who have at least one F508del mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, which is estimated to represent 90% of the cystic fibrosis population. Aubrey has been on this medication for a few years now and it has made significant improvements to her overall health. Her weight has increased, her lung function is great, and she has been able to stop some of the previous inhaled medications.

 

Anyone fortunate enough to spend time with Aubrey knows that she is an absolute inspiration. She confronts this relentless disease every day with unwavering courage, often wearing a smile even when she’s unwell. Every day, I wish I could trade places with her, but I understand the impracticality of such a wish. What we can do, however, is be advocates for her and contribute to funding further research that will one day lead to a cure.

In Aubrey’s honor and for the countless others affected by Cystic Fibrosis, we are committed to raising awareness, supporting the Cystic Fibrosis Foundation, and working tirelessly towards a future where CF no longer casts a shadow over the lives of those we hold dear.

Thank you for joining us on this journey of hope and determination.

 

Our Team