by Simon Goliath
Andrea Luci, 38 years old, a star of Livorno, which in the meantime has gone bankrupt and is in Serie D. In 2013, when he was still playing in Serie A with the Tuscans, his son Marco was diagnosed with Fop, a degenerative disease that affects one child in two million : What do I dream of in 2024? May a cure be found
Andrea Luci remembers his Serie A debut as if it were yesterday. 2013, there he is with the Livorno shirt and the captain’s armband wrapped around his arm. In the background, the adrenaline of the first day of school that infects his teammates and opposing players, those of Rudi Garcia’s Roma. At 28, Andrea was finally where he dreamed of being. It took him some time, Marchisio and Criscito — with whom he shared successes in Juve’s youth teams — often frequent the Champions League: My son Marco was also in the tunnel, ready to get on the pitch with me. Next to us I see Totti. “Do you prefer to shake hands with him?” I ask him. All the children of Livorno would have liked to be in his place. “No, I want to go in with you.”
Marco was 5 years old. After a few months the doctors at the Gaslini hospital in Genoa diagnosed him with fibrodysplasia ossificans progressiva (Fop), a degenerative disease without a cure, which affects one child in two million: In practice what happens is that the bones develop even where they shouldn’t, inside the muscles, tendons, ligaments. The first to worry is Lisa, her wife: Marco was born with hallux valgus, but she is told that this is normal. She raises doubts, she insists, she is labeled as the classic paranoid mother: Then his leg and knee freeze – Luci recalls – a lump appears behind his back. We went around the hospitals without being able to get answers. Nobody could understand anything about it, except my wife, who had guessed the problem by studying on the internet. I denied, I denied, but unfortunately in the end she was right.
In Genoa, in the corridors of the Gaslini, Andrea thinks about retiring: How to continue?. Then he understands that football, which is just fun, can also become a help: to give visibility to research and to afford expensive treatments. We’ve tried them all, but there isn’t a definitive one. It would be useless to continue to rage against Marco. Who is now 16 years old and who for nine months has been interrupting frequent arguments with his brother Edoardo so as not to wake up little Tommaso, who makes sleep difficult for his parents: Why a third child? We thought about it for a long time, then when I returned to Livorno it happened. In fact, in 2020, Luci moved to Carrarese only to then backtrack almost immediately: Marco’s illness was getting worse and my wife couldn’t fight it alone.
Marco can’t run and can’t play sports. At school he can’t sit down because his hip and knee are blocked: But luckily he has a nice group of friends that he has kept since primary school and with whom he goes out to dinner or to celebrate New Year’s Eve. This time too we will pick him up at 3 or 4 in the morning, smiles Andrea. There is no shortage of fears (that the disease will affect the mouth, for example, or the lungs) and daily pain (to be fought with large doses of cortisone), but Marco goes on with his life: He doesn’t love football, even if he has started play fantasy football and Fifa. His greatest passion is drawing, especially portraits. Then the music and the food. When he grows up he imagines himself as a pastry chef.
Once a year, FOP Italia, the only non-profit organization on the topic, founded by the first three families affected by this disease, meets: an opportunity to listen to the latest updates on research and to talk to other parents. Hope unites us. Andrea, who is now 38 years old, continues to play. He wants to bring Livorno, who in the meantime went bankrupt and were forced to start again from Eccellenza, back among the professionals: We are fifth in our Serie D group, we will fight until the end. We have many good young people. He played at San Siro, after the Christmas break he will face Poggibonsi: But I have no regrets. In my best moment, when I was in Serie A, I broke my knee. I was at the limit, you can see that the level was too high for me. The dream for 2024?: A cure for Marco. Then we will stay in Livorno for the rest of our lives, at our home.
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December 26, 2023 (modified December 26, 2023 | 6.46 pm)
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