By Cecilia Córdoba, mother of Agustina Milagros Kaucic
When my daughter Agustina was 2 and a half years old, our lives changed forever.
It was very difficult to reach a diagnosis. And when we finally received it, it was devastating.
We found ourselves in a desert.
The first thing we were told was that there was no cure. Then they told us our daughter would not live past the age of 6. It was one of the hardest blows our family has ever faced. No one could really explain what Fanconi anemia was. We only knew it was a rare disease, and that our little girl had very little time.
But Agustina had other plans.
She lived until she was 8 years old, defying everything that was against her. She fought tirelessly to live. She went through a bone marrow transplant, long hospitalizations, infections, medications, and countless blood and platelet transfusions.
Through it all, she never stopped being herself.
Agustina was a very happy and deeply loved little girl who always had a smile on her face. She was an actress, a singer, and a dancer. She dreamed of becoming a veterinarian because she loved animals so much. She loved visiting the farm, putting on makeup, listening to music, riding her bicycle with her dad, and living, simply living.
Living with Fanconi anemia is incredibly difficult for children and their families. They endure long, painful hospital stays and countless medical procedures. Every person with FA is different, but they all deserve the chance to live full lives.
That is why we need a real cure.
We also need more people to understand what families affected by FA go through every day. Greater awareness brings understanding, and understanding helps move us closer to better care, more research, and ultimately a cure.
My beautiful little girl, Agustina, passed away on July 30, 2024, at 6:10 p.m.
Today, I continue to honor her by carrying her legacy forward.
I am the founder and director of the Argentine Fanconi Anemia Group, an organization I created after Agustina’s diagnosis to raise awareness, make FA more visible, and support other families facing this disease. Today I continue this work from a different place, learning to live with endless grief while creating positive spaces of support and comfort for others.
To the donors who make research possible, thank you.
Thank you for your support. Thank you for helping our children have a better quality of life and for bringing us closer to the day when there is a real cure.
And to the Fanconi Cancer Foundation, thank you for always standing beside my family. Thank you for teaching us about this disease, for creating a global community that connects families across so many countries, for continuing to invest in research and support organizations around the world, and above all, for creating a place where we can remember the people with FA who are no longer with us.
Thank you for keeping their memory alive.
Agustina’s memory lives on in every family supported, every conversation that raises awareness, and every step toward the cure she deserved.
