The beast has not eaten life. It was defeated. It may seem paradoxical, or impossible, but it went just like that. The heart of Cesare, Cece, Zambon, He stopped on February 21 in the pediatric Hospice “The shell of children” of the Gaslini hospital in Genoa.
Cece saw with his eyes only for eighteen months. The rest of his six years (he would have turned seven on May 25th) spent them fighting a brain tumor – the “beast”, as the parents nicknamed him Federico and Valentinaa poisoned fruit of a rare disease, the neurofibromatosis, which affects a person in four thousand – who made him blindly and then took him away a lot, not everything.
Not the ability to see with the heart and imagination, for example, not the adventurer spirit, not the sweet brazenness typical of the children of his age: “Mom, I am beautiful and I like speed and the sea,” he often repeated by making themselves brought by Vanni Oddera, Motocross freestyle sample that has invented Mototherapy for children like Cece, or “forcing” mom and dad to take him on a sailboat or give him a piano that in one of the videos posted on social media cheerfully.
“Cesare is not just his illness, it is what he is left to us, it’s all life,” says Valentina with his husband in his home in his home in his home where we meet them and where Joy, the black labrador, who has been the dog of Cece in recent years, now sly is made while he wants to play. «Last June the doctors had told us that they were very worried about advancing the brain cancer but I didn’t get lost and I brought Cesare with his brothers, Alessandro and Teresa, On vacation in Puglia, “says Valentina,” already in May 2022 they had warned us that they did not know how much it would live because the tumor had moved to a delicate area of the brain, the hypothalamus. “There is a long time, do everything you can do with Cesare but do it quickly”, They told us. We had a year and a half. It was an extraordinary adventure ».
Words that are not the result of the hallucination of two parents overwhelmed by pain. This is the way Valentina told the story of her son from the beginning. First on social media (Facebook and then Instagram) where the page The story of Caesar He conquered almost 500 thousand followers. Browing it, there are no anger, despair, fear.
All messages from the Zambon family are marked by the strength of living, courage, hope, above all, love for life. Here is cece to smile on the hospital bed. Here is Cece in the arms of the mother in front of the sea of Boccadasse. Here it is still embraced by Olly, The winner of Sanremo, on 2 November in an event in Genoa. Or brought out into a stroller with the mother describing what happens around it: now a scooter arrives, now the red starts. He writes: «Life gave me you and therefore I will celebrate it. Simply us. One breath at a time ». Then he adds, quoting Fiorella Mannoia: «However absurd and complex it seems to us, life is perfect. As far as they seem inconsistent and stubborn, if you fall awaits you. It is we who should learn to keep it tight. Keep it tight ».
Some images of Cesare Zambon taken from social networks
After the story on social media, Valentina also wrote two books: And we will want the fear over (DeAgostini), released last year after the success of the bestseller the story of Cesare of 2023 in which Valentina told the disease of the son and the story of a family that did not give up on pain, did not let himself be overwhelmed by the beast, even in some hairpin bends he risked derailing.
Telling is always an act of love. And it allows you not to feel alone. “This is what saved us in recent years,” Valentina confides, “when the diagnosis of the disease in Trieste arrived we felt displaced, overwhelmed, helpless. Even if you have many friends, many people next to you, they love you, The disease, moreover a rare disease like this, thrives on you in a foreign land, falls in solitude, makes you feel different, an alien. This is what happened to our family ».
It is mocking at the beginning, neurofibromatosis. It manifests itself with caffelatte colored spots on the skin, like small cravings that arouse almost a sense of tenderness. The question of the doctors, at the beginning, is always one: how many are? Because from the number it is clear if it is a beast that can be tamed and keep under control or not.
“For Cesare it was not so,” says Valentina, “he caused him a brain tumor that at 18 months made him lose his sight. From then on, the beast has always raised the bar: the Covid, the blindness, the race for Gaslini where the doctors, in front of the same situation, were much less optimistic than the colleagues of Trieste ». All quickly.
Federico and Valentina left Conegliano Veneto, where they lived, to move to Genoa to take care of Cece: «A city that welcomed us very well and where we now feel at home. We won’t go anymore ». This is the city where the eldest son, Alessandro, who attends the eighth grade, plays in the youth of Genoa while his little sister, Teresa, is in the last year of elementary school.
When in November 2019, in Rome, Valentina and Federico had left the hospital with the certainty that Cesare would no longer regain his sight, as the doctors had told him, they were struggles, silent for pain. Then, in Trastevere, they come across a girl, Bebe Vio, Which, when her future seemed broken, she put it back on her feet with stubbornness and strength of mind until she became world champion of foil with two gold medals won in Rio 2016 and Tokyo 2020. Valentina goes to disturb her, Bebe Vio says to her: “I have a strafigo friend who is blind but life has taken it all”.
The friend is Daniele Cassioli, Blind from birth precisely, the largest Paralympic nautical skier of all times that has conquered 28 world titles, 27 European titles and 45 Italian titles. So Cassioli becomes a friend of Cece and his family. “It was a providential meeting,” says Valentina, “I understood that Caesar could have seen in another way, not with the eyes but with all the other senses and with the heart. We supported him, we let him fall and get up on his own, we let him make mistakes, bang at home against some corner.
The Zambon family in the house of Genoa. From left, father Federico, 44 years old, Teresa, 10 years old, mom Valentina, 38, with Cesare, and the eldest son Alessandro, 14. With them also the Labrador Joy, who was the child’s assistance dog during the illness (Ph Courtesy Azzurra Simula)
Under the blows of the beast, the Zambon family also risked shattering. “Yes, because at the beginning Federico and I divided ourselves on many things that concerned the disease, I think it is also normal, then we got help from psychologists and we took a path. Compared to five years ago we are two completely different people», Says Valentina.
Cesare’s last days passed in the Gaslini’s Hospice: “A welcoming and at all lugubrious environment”, the parents say, “where Alessandro and Teresa also came to share his last stretch with his little brother. Psychologists and even the doctors of the hospital told us that it was right. Death is often a taboo but it is part of life».
Federico and Valentina wanted not a classic funeral for Cece but a festive memory, a commemoration organized at the home of some family friends where all the people who participated shared a memory of Cece. I ask him if they are believers. “Federico and I are lost sheep,” replies Valentina by sketching a smile, «But Many believers, when I meet them or enroll me on social media, tell me that our testimony is a powerful hymn to life and hope».
To the other parents who like them cross the dark night of a child’s disease, Valentina recommends “One step at a time, looking at his feet. We must not survive but live. I always say to think of beautiful things, to design beautiful things, even when it seems that everything is collapsing. In recent years, science has made giant steps in research. He will continue to do them. We have to trust ».
Caesar was cremated. The ashes will be placed in the new house where the Zambon family is moving, on the piano that mom and dad had made him give for the fifth birthday. “He loved to play him a lot, he had a lot of fun,” recalls Valentina.
Joy looks like sly next to the table. There is Teresa who is coming out of school and dad must run to pick it up. The life that continues.
Caesar’s story is not just his illness and death. It is the story of a child (and a family) who have also put beauty in the drama, A spark of life in the scandal, without responses, of innocent pain, that of children.
Valentina Mastroianni and the cover of her latest book (photo Giovanni Panizza)
