22 November 2020
Sirio Persichetti cannot speak and cannot feed himself. But the seven-year-old Italian boy has become famous on social media.
Sirio has spastic tetraplegia, a disease that affects movement in three of a person's four legs and arms.
His mouth is permanently open, which prevents him from forming words correctly or swallowing. He is fed liquid nutrition through a tube in his stomach. And he has had a tracheotomy to help him breathe.
But he deals with his condition with such a love for life that his mother, Valentina, decided to create a website for him. She also made accounts on Facebook, Instagram and Twitter to share his everyday life in hopes of inspiring others.
She shares heart-warming videos of him under the title Sirio and the Tetrabonds. The videos have touched the hearts of people all over the world. Tetra comes from the first half of the word tetraplegia and bond from vagabond.
"We wanted to tell the story of disability in a different way, to tell it for what it is," Valentina said.
The public's reaction to young Sirio has been huge. Some of his videos have been watched more than 130,000 times.
"In a short time, the response, especially from families living in similar situations, was powerful and exciting so we decided to keep going," his mother said.
Breaking the stigma
Valentina publishes videos of Sirio doing things like going to school, while carrying a bag almost as big as he is. In another video, he is driving a play electric car. In another, he is waking up his older brother, Nilo.
Sirio's followers respond with a countless number of "likes" and messages of support.
Valentina said she wanted to end the stigma – or unfair beliefs – that often surrounds disability. She wanted to show that children with special needs can still have fun and lead a happy life.
"We understood that it is...necessary to talk about disability without (seeking) pity, different from the usual way disability is narrated," she said.
Valentina writes the descriptions that go with each of Sirio's videos. She does so by imagining the world as seen through his eyes.
"Here I am arriving at the playground, fearless and proud while mamma watches me like a hawk. It's not easy trying to live a normal life when you have disabilities but I try anyway," reads one video description.
Valentina works in a call center for the postal service. Her husband, Paolo, is a researcher. The family has two caregivers who work on different days to help them with Sirio.
Valentina said she never expected her son to become famous on social media.
"But we realized that is useful," she added, "that it helps and is a necessary step to make the life of many people much more normal."
I'm Alice Bryant.
Reuters news agency reported this story. Alice Bryant adapted it for Learning English. Ashley Thompson was the editor.
Words in This Story
tracheotomy – n. a medical procedure that involves making an opening in the neck to place a tube into a person's windpipe
vagabond – n. a person who travels from place to place and does not have a home or much money
response – n. something that is done as a reaction to something else
exciting – adj. causing feelings of interest and enthusiasm
bag – n. a container made of thin material (such as paper, plastic, or cloth) that opens at the top and is used for holding or carrying things
pity – n. a strong feeling of sadness or sympathy for someone or something
narrate – v. to tell a story about something
proud – adj. very happy and pleased because of something you have done, something you own, someone you know or are related to, etc.
watch (someone) like a hawk – expression. to observe someone very closely