Meet Rober
I never imagined the word leukodystrophy would appear in my life. The first time I heard it, my body trembled, a cold sweat ran through me, and I fell to the floor of a cold neurology office. I never imagined it would be spoken alongside the name of my son, Rober, a three year old boy full of light, contagious laughter, and endless energy. But suddenly, in the middle of what we thought was a normal routine, the ground opened beneath our feet. Our dreams vanished and our world collapsed.
It all began in August, during vacation. A fall. A simple fall, the kind any child has fifty times a day. But this time it was different. From that moment on, everything changed. Rober did not react like he usually did. I noticed he was clumsier, more disconnected from his movements. He even stopped wanting to swing at the park. Something had changed, and I, his mother, knew it from the very first moment.
Although the doctors insisted it was “just trauma,” just a hard hit and nothing more, I felt there was something else. A mother knows her child, and when something does not fit, that instinct does not stay silent.
The tests began. The visits. The doubts. I went to the emergency room more than eight times searching for answers that never came. Every time we left the hospital, I felt like something was slipping through our fingers. They probably thought I was an overreacting mother and that my child was perfectly fine.
Until finally, they decided to do an MRI. That was the turning point.
They found nothing related to the fall. But they did find something unexpected. The white matter of his brain was altered. An unforeseen and accidental finding that set off every alarm and placed us in a scenario we never could have imagined.
From that moment, our second life began, the life “after the diagnosis.” The parents we once were disappeared and gave way to people we did not recognize.
A life of therapies, reports, early mornings, medical visits, uncertainty and fear. A lot of fear. A life we never asked for but embraced without hesitation, because when it comes to a child, you learn to be strong, even when your voice is breaking.
The days filled with sessions. Physical therapy, sensory stimulation, speech therapy, swimming. His therapists, Belén, Marisa, Isabel, and Trinidad from APANID, became an essential pillar. They did not only work with him. They worked with me, with my fear, my exhaustion, with that invisible weight that comes with caring for a child with a rare disease. Their support has been a lifesaver on the days when it feels hard to breathe.
But we also learned that not everything is loss. In the middle of the chaos, we found small islands of peace. The pool. Aquatic therapy. Those moments in the water where Rober feels free, where his muscles relax and his smile becomes enormous again. There, he is himself again. Without limits. Without stiffness. Without diagnoses chasing him.
And in this story there is also hope. Although there is no cure, there is a ray of light on our horizon. The experimental treatment ION 373 from IONIS, a therapy that could change the course of this disease. We do not know if it will arrive in time. We do not know if it will be approved. But we hold onto that possibility because it is what we have. Because a mother and father never stop fighting.
We also learned that this path cannot be walked alone. The Association ELA España, Carmen, Giselle, and Kiara lit the way through the darkness from the very beginning. Jesús Merlo from Asociación Poco Frecuentes reached out his hand when we needed it most. They taught us that even if the disease is rare, we are not alone. There are families like ours who have cried the same tears and have also found ways to move forward.
That is why we decided to take another step and create “RoberContraAlexander,” a place from which to shout that we exist, that these diseases exist, that our children are not statistics. They deserve research, attention, resources, and a real opportunity.
Sometimes people ask me how you live with something like this. There is no manual. You learn day by day. You cry. You scream. You breathe. And you start again. You are grateful for progress, no matter how small. You celebrate every gesture, every movement, every laugh. And you learn to find beauty even in difficult days, where family and friends become essential. So many people wanting to help Rober, some without even knowing him, have been a light in our darkest days.
Today Rober keeps fighting. And we fight with him. We walk together, without certainty, but with a love so big it pushes us forward even when strength runs out. This is our story. The story of a family that does not give up. The story of a child who, at only three years old, has shown more courage than many adults, even more than his parents.
A story we want to tell because making the invisible visible saves, unites, and moves mountains. And because Rober, our Robe, deserves the world to know his fight, his smile, and his incredible ability to bring light even to the darkest days.
