RIO DE JANEIRO, BRAZIL – “He taught me how to be strong and it’s my fuel. My heart beats out of my chest,” said Bárbara Ferreira da Silva, 32, referring to her son Bernardo, three years and nine months old, diagnosed with the congenital syndrome of the Zika virus.
Bárbara says she had no symptoms of the disease during her pregnancy. “But when my son was born, I realized that there was something different. He cried a lot and did not sleep, the doctors prescribed teas and massages, but it was useless”.
“It was only when Bernardo was already four months old, and I went through a medical campaign that my son was diagnosed. I was forced to quit my job as a secretary, leave the city of Caruaru, in the interior of Pernambuco, and head for Recife to seek treatment,” she said.
The shopkeeper Carolina Calabria de Paula Baptista, the mother of Lis, three years old, said that the daily routine is very busy. “From Monday to Friday, she undergoes morning therapies: physiotherapy, speech therapy and occupational therapy and, once a week, she attends aquatic physiotherapy. And she still has the appointments, she has to be followed by several specialists”, she described.
She is pregnant with her second child and said that being the mother of a special child only changes the routine. “When you are a mother, love, regardless of whether the child has any syndrome, is immutable, what changes is our daily life, the routine, which is more demanding”.
Attending the exhibition was a very interesting experience for her. “This year’s photos were taken at our house, we displayed Liz’s daily life and it was very interesting, the records are forever recorded. The photo team is very welcoming”.
Bernardo and Liz are two of the 11 children with microcephaly caused by the congenital syndrome of the Zika virus who are part of the photographic exhibition ‘Toda Criança é Especial’ (‘Every Child is Special’), promoted by Instituto Luz Natural, a non-profit organization that uses photography as a tool for social change.
The children were portrayed by two specialists in children’s photography. At the invitation of the Pernambuco photographer Andréa Leal, the São Paulo photographer Simone Silvério portrayed the children in 2018. The photos included the intervention of artist Alyson Carvalho.
In 2019, a year and a half after the first session, the children were again photographed along with their families, under the eyes of Andréa Leal. The result, in addition to the artistic approach, aims to bring visibility to these children and show that their needs for inclusion, rehabilitation, and citizenship need to be met.
When the outbreak occurred and with a potential epidemic in 2015, the world turned its attention to these children. Today, there is a gradual forgetfulness of the subject in the country, but the consequences for each baby of a mother infected during pregnancy are for life.
As long as there is no control over Aedes aegypti, the risk will remain. In Brazil, more than 3,000 children have been born with microcephaly caused by Zika since 2015.
Opening
After spending time in Pernambuco, the state where the largest number of Zika cases in the country were diagnosed, the show is now held in São Paulo as of Wednesday, November 27th, at Studio Trend Gallery, in Alto de Pinheiros. The exhibition, with free admission, may be visited until December 20th.
The children who were photographed for the exhibition are assisted by the Associação Pernambucana União de Mães de Anjos (Pernambuco Association of Mothers of Angels – UMA). The organization is recognized for the fight for greater assistance to these children’s families.
The social role of photography
“Works such as these clearly illustrate the social role of photography. The way families face tremendous challenges”.
“Stories like these of learning, courage, overcoming, solidarity and, above all, love are what I wished to record with my lenses and share through my eyes. Spending time together, letting oneself be photographed and having great pictures has provided some joyful moments for these people and undoubtedly for me, who had the privilege of their company”.
“I hope that this will contribute, in some way, to bring about more positive results both for these people and for those who are moved by them,” said photographer Simone Silvério.
She takes part in several social projects, such as the exhibition Mulheres no Espelho (“Women in the Mirror”), promoted by the Viver Hoje Institute, with the aim of alerting to the importance of early diagnosis of breast cancer, and the International Campaign to Fight Meningitis, with the Brazilian Paralympic Athletes.
The photographer from Pernambuco, Andréa Leal, founded the Instituto Luz Natural (“Natural Light Institute”). The non-profit organization uses photography as a tool for social change.
In addition to the Every Child is Special project, the institute promotes the Retratos de Mãe (“Portraits of Mother”), Meu Pai, Meu Herói (“My Father, My Hero”) and Luz Natural (“Natural Light”) projects.
Event:
‘Toda Criança é Especial’ Exhibition – portrays children affected by the Zika virus.
Photographers: Simone Silvério and Andréa Leal
Opening: November 27th at 6 PM
Exhibition: November 27th to December 20th
Timetable: from 9 AM to 6 PM, Monday to Friday
Location: Galeria Studio Trend – Rua Costa Carvalho, 213 – Alto de Pinheiros – SP
Free admission
Source: Agência Brasil