This year, we’re walking for our Liv, who is now almost 11 and was born with hypoplastic right heart syndrome (pulmonary atresia with intact ventricular septum), a form of congenital heart disease (CHD).
If you know Liv, you know she absolutely loves dogs and wolves. She has always been drawn to their strength, loyalty, and the idea of a pack that sticks together. So when we started thinking about our team for the Pediatric Congenital Heart Walk, Liv’s Wolf Pack just felt right.
Liv has already been through more in her young life than most children ever will. She underwent two open-heart surgeries before she was four, with her most recent surgery when she was just 3½ years old. We are incredibly grateful that she has not needed another surgery since then, and we know how fortunate we have been.
But congenital heart disease is not something that simply goes away when the surgeries stop.
Liv still lives with a heart condition every day. She continues to have annual cardiology appointments and has had additional testing and monitoring throughout the years, including a cardiac catheterization a few years ago. Most recently, she wore a cardiac monitor for 48 hours—and handled it like a champ!
As Liv has gotten older, she has also become more aware of what makes her different. Rather than letting that define her, she has learned to embrace it. She knows she is a fighter, and she is proud of the strength she has developed along the way.
We also know how incredibly fortunate Liv has been. She has had an amazing medical team, incredible support, and, most importantly, the opportunity to grow and simply be a kid. We never take that for granted.
But her journey is far from over.
That is why we are walking.
Congenital heart disease is the most common birth defect, yet there is still so much that researchers and doctors don't know about these complex heart conditions and what life looks like for children as they grow into adulthood.
Our hope through this walk is not simply to raise money. We want to raise awareness. We want people to understand that CHD doesn't necessarily end when a child leaves the operating room. These children grow up, and their hearts continue to require care, research, and understanding throughout their lives.
Funding research means better treatments, better outcomes, and more answers for children like Liv—and for the families who will walk this road after us.
If you would like to support Liv’s Wolf Pack, donations to congenital heart research are greatly appreciated. Every contribution helps support the research and science needed to better understand CHD, improve treatments, and give children like Liv the best possible future. And simply sharing Liv’s story and helping us spread awareness means so much to our family.
We are incredibly proud of our heart warrior and grateful for the pack that surrounds her—her family, her friends, her doctors, and everyone who has supported her along the way.
Liv was born with a heart that made her journey different, but it also taught her what it means to be strong, resilient, and surrounded by a pack that never lets her walk alone. She has faced every challenge with courage, a little bit of sass, and the heart of a fighter!