Rare disease and parenthood. The testimony of Cesare's parents

His mother Valentina's account reveals the journey of a family that faced fragility and transformed it into an experience of growth, sharing and awareness

The story of Cesare Zambon, who died at the age of six in February 2025 after living with a rare disease, is the story of a family, his mother Valentina, father Federico and siblings Alessandro and Teresa, who learned to love even more deeply. It is the story of a child who, until his very last day, taught adults how to live.

'People often ask me how I am. It is a simple question, but the answer never is. Sometimes I feel as though I have one lung missing, as if something essential for breathing were no longer there. When you lose a child, you do not only lose someone you love. You lose part of yourself, part of the way you exist in the world. And yet, if there is one thing Cesare taught me, it is that life does not stop being life even when it hurts. Cesare came into our family with his smile, his blond hair and that energy that seemed inexhaustible. He was the youngest in the family, the one who filled rooms with laughter, games and questions. Then the illness arrived. At first there were only signs we did not know how to interpret. One diagnosis, then another, then words no parent should ever have to hear: neurofibromatosis, an incurable tumour. I still remember the bewilderment, the feeling of being thrown into an unknown world, a world where no one teaches you how to live. A world made of hospitals, tests, waiting and fear. When you discover that your child is ill, your life splits in two. There is a before and an after. Before is the time of innocence. After is the time when you learn to live with fear, to accept it in order to face it, because Cesare had decided to teach us something different.'

'At eighteen months he lost his sight. We thought it would be impossible to accept, yet he went on living, laughing and loving the world. He was the one who guided us, not the other way around. His strength was quiet and everyday, the strength of someone who wakes up each morning and decides to live anyway. He did not complain, he did not get angry, he did not ask why. And every time I felt anger rising, every time I thought it was unfair, I looked at him and asked myself: if Cesare is not angry with such a difficult life, why should I be? He taught us gratitude, not the gratitude of great occasions, but of small things: a ray of sunshine, a song, a touch, a journey, a sunset, sharing every moment together. The illness took a great deal from us, but Cesare always managed to show us what remained. And what remained was enormous. For years we lived with the awareness that time was precious. Every day could be a gift, every moment could become a memory, so we chose to live, not merely survive. We travelled, we had experiences, searching for beauty wherever we could find it. Because the illness was part of our story, not our whole story. Cesare was not the tumour, he was not the diagnosis, he was not his disability. Cesare was a child who loved music, the sea and speed. A child who knew how to laugh and how to love. The illness kept trying to take something away from him: first his sight, then movement and independence, but never his desire to live. That stayed with him until the very last moment.'

Cece's legacy

'We met doctors, nurses, volunteers and extraordinary people. We discovered that wonderful bonds can be born even in places of pain. For years I told our story. At first I did it so I would not feel alone, then I realised that telling it helped others too, because pain changes shape when it is shared. It does not weigh less, but when shared together it weighs differently. In the final months we understood that time was changing, that the journey was becoming harder and more fragile. Yet even then Cesare continued to teach us, showing us how life can be loved until the last breath. When I think of him, I do not think of the illness. I think of his smile, his hands on the piano, his laughter. I think of the light he was able to bring wherever he went. That is why today, when someone asks what he left us, I always give the same answer: he left us life, so much life. The emptiness exists and always will. But alongside the emptiness there is also everything Cesare gave us: the ability to see what really matters, the ability to stop, to love unconditionally, the ability to find beauty even on the hardest days. I cannot explain the pain of losing a child. Love remains, changes shape, transforms and continues to live in gestures, memories and in the people we have become. Cece came to this Earth to change many hearts, and he certainly changed ours. He no longer walks beside us as before, but he is in every step we take. He is in the wind we feel on our faces, in the music we listen to and in the beautiful things we still choose to see.'