By Tamara Estes
When Annzie was six, what started as a routine well visit turned our world upside down. She had always been small for her age, but that visit revealed more: recurring infections and low platelet counts that led to urgent bloodwork. We were referred to hematology, and that began our FA journey.
Looking back, the signs were there. She was born with a malformed thumb. She had slow growth, even in utero. We had recently learned about her hearing loss, and then her platelets were low. Hematology ordered genetic testing, and we waited nine long weeks for results. During that time, her bone marrow failure became more obvious, with all her counts dropping. I remember feeling like we had discovered it just in time. Any sickness or injury could have changed everything.
Eight months after diagnosis, Annzie had a bone marrow transplant. We are still less than a year from her diagnosis, and it has completely rocked our world. I wish more people understood the severity and complexity of FA. Even many doctors do not fully grasp how sensitive their bodies are. If a medication has a rare side effect that most people never see, our kids are often the ones who will experience it. And transplant is not a cure.
Our family was separated for many months during and after transplant. While Annzie still has weekly appointments, we are so happy to be home together again under one roof. She still can’t be around crowds yet, so in order to keep up with the other kids, we have to divide and conquer almost daily. It truly has affected all family members.
One of the most meaningful moments for me during this entire journey was when we found out my oldest daughter was a perfect 10/10 match for her sister. In that moment, I felt God reminding us that He has taken care of every detail. This diagnosis may have surprised us, but it was not a surprise to Him.
I will never forget flying home after Annzie’s first bone marrow biopsy. We hit turbulence, and she grabbed my hand and asked if we were going to be okay. I told her yes. When she asked how I knew, I said, “We just have to trust the pilot.” And that is what we are doing, trusting God through this journey.
Annzie has always been our wild child, and we love it. She sings, she dances, and “This Girl is on Fire” is her anthem. She loves her cows and her dog, riding 4-wheelers, and swimming. I’m pretty sure she could already get a nursing degree at the age of seven, but she wants to be an artist or a rockstar. She does not even realize how much of a rockstar she already is!
My family and I want to thank everyone who supports FA research. Not that long ago, kids with FA were not making it past their first decade. Now there is so much more hope. We cannot wait to see the progress still to come.
We are also so thankful for the FA community. Advice is helpful, but nothing compares to connecting with families walking the same road. More than anything, I hope for a cure. For FA, and for cancer.
