ABOUT US
We are a family bound together by love, resilience, and an unshakable faith. Our journey has been filled with challenges, but it has also revealed unexpected moments of strength, lessons learned through perseverance, and a deeper appreciation for every step forward.
When our daughter was diagnosed with Berdon syndrome, our lives changed in ways we could have never imagined. Each day, we have learned to embrace the challenges this journey brings — meeting every uncertainty with courage, holding tight to our faith in God, and trusting in her incredible strength to rise above every obstacle.
This blog was born as a way to share our journey, our experiences, and the unbreakable love that holds us together as a family. Here, we hope to offer support, raise awareness about this rare condition, and above all, inspire other families who may be walking a similar path. Even though the road is hard, we know that unity and love are the forces that carry us forward.
Thank you for walking this journey with us, for embracing our stories, and for becoming part of a community built on hope and compassion. Together, our voices rise stronger, and our hearts create a space where understanding and love light the way forward.
‘It’s not possible because of the syndrome.’ This phrase is often used by specialists as a shield, limiting the possibilities for our Berdon children. Yes, we acknowledge that the genetic mutation — still not fully understood — cannot be reversed. But we also know that there are ways to improve our children’s quality of life. Science and medicine must go beyond the mutation itself, studying the unique symptoms each child presents, because no two cases are exactly alike. We need doctors who are willing to move past what cannot be done and focus on what CAN be achieved — through treatments and alternative supports that truly make a difference, that transform lives, and that offer these children and their families the opportunity to live fully, with dignity and hope.
I know the struggle each of you faces. I know the heroic acts of every child and their mothers, the tears shed, the sleepless nights, the anxiety, and the frustration we endure because of that initial phrase.
Today, I choose to rise. I refuse to accept limits placed by short-sighted eyes. I believe — with unshakable faith — that there are paths yet to be discovered, solutions waiting to be found, and people willing to fight alongside us. I have always known deep within me: things can be different. And now, I am certain — change is not just possible, it is already beginning.
I may not be a doctor, but I am a mother — and through this journey, I have witnessed the incredible power of FAITH, SCIENCE, and ACTION united in hope and determination.
Note: This audio is only available in Spanish.
01. Diagnosis
Two days had passed since she was born — two days filled with a constant flow of doctors from different specialties and cultures walking in and out of my postpartum room. At last, they gave us a diagnosis — one
02. The Prognosis
On her second day of life, they were able to perform the surgery that would either save her or, at least, prolong her life. And although there was still much left to discover, the doctors began to tell us the
03. The Forgotten Things
Micaela I lived for about two weeks in the hospital, in a room with all the comforts provided for parents with children in the intensive care unit. My husband would come and go because we had another daughter, Micaela, who
