Oristano, the boy with ALS celebrates 25 years. “He’s tiring, but I love life.” On social media: “I tell myself without filters: every day I find a good reason not to give up”. The most exciting meeting: “For a believer like me, it was Pope Francis”
“Hi dear”. Paolo’s voice arrives metallic, with the help of the “communicator”. Next to him is the father Marco which, with the mom Soniaassists him day and night. Rosario, the brother, he has started work again and is now out, but will answer the phone later. “Forgive the slowness, but it takes me a while,” she apologizes. And she explains: “For five years I have been communicating with a system that detects the movement of my eyes through a camera: in short, a mouse, but controlled with the eyes ». Paolo Palumbo turned 25 on August 16. The last six in the company of Sla. To celebrate him, his parents gave him a giant cake and a party with all his relatives and friends. That day on Instagram, where more than a hundred thousand people follow him, he wrote: «I want the best wishes from all of you all. You have no idea of the sacrifice and pains that destroy me, but today I grit my teeth and hold on. If you want to give me a gift write a message on WhatsApp or a text message to the 350.0539511. I will be eternally grateful to you. I love you. A kiss to everyone. LONG LIVE THE LIFE! ».
The album “There Are”
Anyone who sends a message discovers “the project” that has been floating around in Paolo’s posts for days: with the Campania instrumentalist Antonio Conte he just recorded the song There arewhich he will send to those who want to listen to it, with a payment of 23.79 euros. Explains: “By buying my record, you help me buy drugs and aids that are essential for my life and for my survival“. And it is his brother Rosario, now, who adds, with admiration: “Paolo has this cheerfulness, this crazy determination. He worked hard and created the project to finance himself ».
The expenses to be faced
Marco, the father, shows the accounts of the disability pension – 800 euros – plus 500 euros for accompaniment. And he calculates: “The last electricity bill was 2,500 euros. But we certainly cannot save on that: Paolo is attached to the machinery 24 hours a day. There are the respirator, the aspirator, the computer, the pump for the feeding ». He does not say it with victimhood, because if there is one thing that this Nuorese family very united it manages to transmit, it is the acceptance of change. Ten years ago their life was divided between Bucharest, in winter, and Porto Cervo, in summer, where husband and wife worked as chefs and pastry chefs. Now they have stopped at Oristanoin an uncle’s house, where Paolo’s accommodation is more comfortable.
Meetings with Fiorello and the Pope
“P.I enso, I laugh, I seek, I sound, I trigger, I join, I react, I am / I think, I laugh, I look for, I live and I still believe it
“. Thus sings the voice of Paul returned by the communicator. An imperative not to give up that he gave himself after the diagnosis and that accompanied him in his extraordinary meetings: with Obama, Pope francesco, the president Mattarella, Fiorello, Albano and Romina, up to the Sanremo stage, in 2020, with Amadeus
. He admits: “They were all very important meetings, I don’t want the others, but without a shadow of a doubt for a person of faith like me to receive the caress and kiss from Pope Francis was a miracle.”
A good reason every day
Paolo never gave up. He patented a tampon to make food tastes like him who can no longer swallow, he recorded a record with Achille Lauro, he published a recipe book with the Sardinian chef Luigi Pomata (Flavors in color) and an autobiography (My eyes are enough to fly). Every day he writes on social media, which he follows alone. «I publish one post a day to show the everyday life of someone like me who fights for life, but also to share what I feel. Story without filters, I do not hide the pain and suffering. Every day I find a good reason and every day I find it as soon as I wake up: being alive ».
August 22, 2022 (change August 22, 2022 | 09:29)
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