Advocating for Liver Health with Sadie’s Journey
Every parent hopes to see their child thrive and grow, but our journey took an unexpected turn that tested our strength and deepened our gratitude. It was during a routine checkup that we first heard the words ‘biliary atresia’—a rare condition that turned our world upside down. From that moment, every breath became a prayer for Sadie’s health and future.
Sadie is our little miracle. Every year, we are amazed at her growth, her fierceness, and her energy. She embodies life itself, illuminating our lives with every step she takes. Despite the challenges she faced early on with biliary atresia, Sadie’s resilience has been nothing short of inspirational.
The Diagnosis That Changed Everything
Our journey began unexpectedly when Sadie, only a few months old, couldn’t shake off a persistent jaundice. After numerous tests, the diagnosis was heartbreaking: Biliary Atresia, a rare pediatric liver disease where the bile ducts are absent or malformed, preventing the normal drainage of bile from the liver. This condition causes severe liver damage and, if left untreated, can be fatal.
The Agonizing Wait for a Miracle
The news that Sadie needed a liver transplant to survive was devastating. As any parent would, we felt a whirlwind of emotions—hope mingled with despair, the joy of potential recovery shadowed by the grief of knowing that another family would face loss for our daughter to live. “It’s difficult because you know that if you don’t find a living donor … then you know that someone has to die for your child to live. And that is just heartbreaking,” I once explained in an interview. We were placed on an organ transplant list and began the excruciating wait.
A Miracle Through Loss
After 93 days of anxious waiting and praying, we received the call that would change our lives. It was both the worst and best day of my life. My father had just passed away unexpectedly, and within hours of his passing, we were informed that a donor was found for Sadie. “My father went to heaven so that my baby could live, and I truly believe that now. He’s her guardian angel, and she has not been sick since,” I shared, feeling the profound bittersweet twist of fate. This miracle allowed Sadie to undergo a successful transplant, and she has been thriving ever since.
Advocacy and Awareness
This experience has galvanized my dedication to liver health advocacy. I’ve seen firsthand how critical organ donation is and how it can save lives like Sadie’s. It’s why I work tirelessly with the Liver Foundation, aiming to improve awareness, encourage organ donation, and support families navigating similar challenges. Sadie now serves as the National Liver Champion for Charlotte’s first-ever Liver Walk and events across the country, embodying the hope and resilience that organ donation can bring.
Join Us in Making a Difference
I share our story not just to spread awareness but to ignite action. “Almost 100 million people are affected by liver disease in the U.S., and so many people die on that list, and we want to do better. And we hope that our advocacy will help with that,” I emphasized during the recent Liver Walk. Every single effort counts, from raising awareness to signing up as an organ donor.
Thank you for taking the time to read about our journey. If you feel moved to help, consider supporting the Liver Walk or learning more about organ donation. Together, we can make a significant impact.
With all my love and gratitude,
Ellen