Those that know me, know that I have been an advocate for congenital heart defect awareness and research for nearly 5 years now… and that was where my story, my “why” began. 

In early 2018, I found out I was pregnant with my first child. The joy & excitement I felt  was immeasurable. But it wouldn’t last. A few short months later, those happy feelings were replaced by fear, helplessness and sadness, with a single sentence: 

“There is something wrong with your baby’s heart.” 

Approximately 22 weeks into my pregnancy, this devastating blow left my husband and I reeling. Our sweet baby girl was initially diagnosed with coarctation (narrowing) of the aorta, but more defects were suspected and eventually confirmed after birth. 

Congenital heart defects (structural deformities of the heart present at birth) are the most common birth defect, affecting nearly 1% of babies, or about 40,000 births per year in the United States. As common as it is, it was not something that was even on my radar when I was newly pregnant. The heartache and guilt I felt was beyond description. There is no way to explain how you get through it - you just do. 

My daughter, Charley Rae, was born at Children’s Hospital of Colorado on November 23, 2018. She had open-heart surgery on November 27th, at only 4 days old. She had some setbacks during her recovery, most notably damage to her vocal cord that was causing her to aspirate her feeds. Her medical team ultimately recommended a gastrostomy tube (g-tube) in order for her to feed safely, so she underwent a second surgery just days after the first. 

Those early days, in the thick of the chaos and fear, are behind us and often feel like a bad dream. Charley has done exceptionally well since then and is now a happy and thriving 4 year old. 

Though Charley’s story has a positive outcome, too many babies are not as fortunate. Many babies and small children go on to have multiple open-heart surgeries, lengthy hospital stays, and even worse: 25% of babies with critical CHDs will not survive to their first birthday. 

This is why funding for CHD research is imperative. Research has given children a chance to survive when they wouldn’t have 20 years ago. 

The Children’s Heart Foundation’s mission is to “advance the diagnosis, treatment, and prevention of congenital heart defects by funding the most promising research.” 

From 1996 to 2021, The Children’s Heart Foundation has provided $15 million worth of funding for CHD research that has ultimately led to increases in survival rates and improved quality of life for those living with CHDs. 

With all that in mind, I am honored to be running the TCS New York City Marathon for team “Hearts that Race” on November 5, 2023! I am excited to take on this challenge, all while raising money for this charity that is so near and dear to my heart.

Thank you for considering donating to The Children’s Heart Foundation! My fundraising goal is $5,000. Charley, my heart warrior, is proof that we can do hard things and come back stronger on the other side. We can help to give children born with CHDs a better quality of life. Your donation could even fund the research that leads to a cure! 

Let’s do this. 

-Ashley, heart mom & world’s okayest runner