Sadie Lives Fully, Fearlessly, and with Unwavering Hope - by Amy VanMeter

My daughter Sadie was diagnosed with mosaic Turner syndrome (TS) at the age of 9, and in that moment, everything suddenly started to make sense. From the beginning, Sadie has faced challenges that most children never encounter. She was born prematurely, and while we never knew it at the time, Turner syndrome was the hidden thread behind her early struggles.

Childhood illnesses like recurring kidney and ear infections were just “things kids get” until her body began to tell a bigger story. At 8, when she developed Bell’s Palsy, we knew it was time to dig deeper. That’s when her doctor ran a full blood panel, and we discovered her thyroid was extremely high. That’s when we learned Sadie also has Hashimoto’s disease.

Suddenly, we were learning what our new normal would look like, thinking we had climbed one giant hurdle, only to realize there were many more ahead. Our journey took a sharp turn when we went to our state’s top children’s hospital, only to have an ENT ask us if we had ever heard of Turner syndrome. We hadn’t.

From that moment, life as we knew it changed forever. We entered a whirlwind of specialists, tests, and uncertainty. It was unpredictable. It was scary. And it was a life that required courage we didn’t know we had. We discovered the complexities of her kidney and bladder issues, her Hashimoto’s, her hearing challenges, and more. What should have been routine tonsillectomy and adenoidectomy (T&A) surgery became a life-threatening ordeal when Sadie hemorrhaged. Emergency surgery was required to save her life.

And yet, through all these extraordinary challenges, Sadie continues to amaze us. She has an ear canal that is collapsing, a bone that doesn’t conduct sound properly, and tests that suggest she should be nearly deaf, but she lives in a world full of sound. She loves music, and delights in every sound she can experience. Science might call it impossible, rare, a “2% case", but for Sadie, its simply life, and she meets it with courage, joy, and resilience. Time and time again, she proves that even the rarest challenges cannot define her. She is not just surviving; she is thriving, showing us all what it means to live fully, fearlessly, and with unwavering hope.

Sadie’s story is a reminder that even in the face of the most unpredictable circumstances, there is power in persistence, joy in the journey, and strength in the spirit. She may be one in a hundred, one in a thousand, one in 2%, but to us, she is one of a kind, extraordinary in every way. And she teaches us every single day that miracles aren’t just found in science or medicine, they’re found in courage, love, and the relentless heart of a little girl who refuses to let anything dim her light.