By Ria Newman
THIS BOY’S unique skin condition has bagged him a job as an international model – but strangers still presume he is a BURNS SURVIVOR.
Samuel Silva (7) from Bahia, Brazil, was born in 2013 with piebaldism, a rare genetic condition that means parts of his skin and hair are white from lack of melanin.
His mother, nail technician Nivianei de Jesus Purificaçao (41) and grandmother, Dona Dionisia (65) have similar markings, with the most distinctive being across their foreheads and hairline. Samuel also has uncles and cousins with piebaldism.
Dona was discriminated against due to her skin and always covered herself up with long-sleeve tops and trousers, and her daughter was nicknamed ‘Free Willy’ after the killer whale in the 1993 film.
But Nivianei was determined to embrace her differences, wearing revealing clothes and standing her ground against any bullying. She and husband Carlos (40) welcomed their first child, daughter Andreia in 2001, and she was born with no markings. Nivianei hoped Samuel would be the same so he wouldn’t have to experience the constant stares and questions from strangers.
Samuel has attracted attention since his birth, with strangers ignorantly assuming he has been involved in an accident or has burn scars.
Initially, his parents shaved his head so as not to reveal his ‘white crest’ but decided to let it grow and embrace it in February 2019 They started an Instagram account to share pictures of Samuel and his stunning markings, which attracted the attention of a top children’s modelling agency, Sugar Kids, in April 2019.
Samuel was an overnight sensation, appearing in campaigns and editorial jobs for magazines including Junior Style London, Bazaar Kids, Dixie Magazine, and more, as well as appearing on the runway in Toronto Fashion Week, Paris Fashion Week and London Kids Fashion Week.
Although he feels different to other children, Samuel is proud to be himself and shows remarkable confidence while modelling. His family says he ‘thrives’ during photoshoots and tells everyone about his ‘beautiful stains’.
They hope that other children with visible differences will be inspired to accept themselves.
Piebaldism does not pose any health threats and is often confused with vitiligo, where the skin loses its pigment and results in discoloured patches across the body that change over time.
“Samuel was born with white markings all over his body, including his forehead and hair, the same as his mother and grandmother,” Samuel’s uncle, Julio Sanchez-Velo (53), said.
“The doctor didn’t think much of it because he was healthy. The family had never been properly diagnosed and just referred to the markings as a birthmark. But they knew it wasn’t vitiligo as the stains never changed in shape or size.
“Samuel’s grandmother, Dona, had a hard time growing up. She was discriminated against whenever she went outside, so she preferred to stay home and not be exposed to the stares and comments.
“In spite of the hot climate, she would always cover up with long-sleeve shirts and trousers if she went outside. She was very protective when Samuel’s mother, Nivianei, was born and told her to cover up too.
“Nivianei knew she was different and embraced it with open arms. She wore short skirts and tops whenever she wanted, and always stood her ground against anyone who dared to bully her.
“She gained everyone’s respect in the community and would then only receive stares and comments when she left her neighbourhood.
“She was given the nickname Free Willy from the movie about the killer whale who had white markings, but she embraced the name and said it with pride.”
When Nivianei fell pregnant for the second time, she hoped the baby would not have her condition so they would not have to experience the same discrimination she and her mother had.
“Nivianei knew she would have to do whatever she could to help Samuel grow up being proud of his skin. The family brought him up to accept himself and his differences,” Julio said.
“Samuel attracts a lot of attention in public, like when he is shirtless on the beach and you can see the white markings all over his body. Strangers will come up and ask all sorts of ignorant questions, like if Samuel has been burnt in an accident. Everyone is used to it and just explains what piebaldism is.
“Samuel’s hair in particular is stunning. His parents used to shave it so as not to draw more attention to his condition, but once they let it grow into an afro it looked amazing.
“When his mother started sharing pictures on Instagram, one of the biggest child modelling agencies in Europe discovered Samuel. He became a local celebrity overnight, and started doing campaigns and fashion shows.
“He really loves modelling. He is very artistic and loves to walk on the runway and pose for photographs. He really thrives and you can see it in his face.
“Samuel knows he is different and has embraced it even at his young age. He tells everyone who asks about his ‘stains’ that he is an international model and is beautiful.
“He loves being the centre of attention and travelling. He comes from a poor community in Brazil where there are not many opportunities to see the world.
“He has become the face of acceptance and inclusion in the children’s fashion industry, and we hope that other kids who feel different about themselves will see how well Samuel is doing and feel good about their own differences.
“Being different is not something we should hide – we have to embrace it, just like Samuel.”