ROME: Sirio Persichetti cannot speak and cannot feed himself, but the seven-year-old has broken into the social media world with his bizarre everyday style, proving that a disability is not a barrier to inspiring others.
Sirio suffers from spastic quadriplegia, which is a form of cerebral palsy that affects the movement of three limbs.
His mouth is permanently open which prevents him from forming words correctly or swallowing. He was fed fluid through a tube in his stomach and underwent a tracheotomy to help him breathe.
It bears this resilience, vitality and lust for life that drove his mother Valentina to create a website and accounts on Facebook, Instagram, and Twitter to chronicle his daily life in hopes of inspiring others.
It uploads warm videos with funny tales under the title “Sirio and the tetrabonds”, which have touched the hearts of people all over the world. Tetra comes from the first half of quadriplegia and a bond of hobo.
“We wanted to tell the disability story in a different way, to tell it what it is, which is not easy to confront, but if it is directed in the right direction, with the right help, it can allow these children to” enjoy something that can actually be called life, “Valentina said.
The response has been overwhelming, with some videos getting over 130K views.
“In a short time, the response, especially from families living in similar situations, was strong and exciting, so we decided to continue,” Valentina said.
Breaking the stigma
Videos are posted of Serio going to school with a backpack almost as big as himself, driving an electric car or waking up ruthlessly by his older brother Nilo, 10.
Sirio’s followers reply with dozens of likes and messages of support.
Valentina said she wanted to break the stigma that often surrounds disability by showing that having special needs does not mean the end of a child’s fun.
“We understood that it was absolutely necessary to talk about disability without (asking) compassion, unlike the usual way of telling disability,” she said.
Imagining the world as he sees it through his eyes, Valentina writes the posts accompanying the videos.
“Here I come to the stadium, fearless and proud while Mama watches me like a hawk. It’s not easy to try to live a normal life when you have disabilities, but I try anyway,” says one of the posts.
Valentina, 38, who works in a call center for postal services, is helped by her husband Paolo, a 58-year-old researcher, and two caregivers work on alternate days.
She said she never expected it to be so widespread, “but we realized that it was helpful, that it helped and a necessary step to make many people’s lives normal.”