It's a bright Thursday morning in Maceió, in eastern Brazil.
Ruty Pereira has no shortage of tasks to keep her busy at home. But here she is, seated in the front row of a meeting at her local community center. Paintings of balloons and clouds decorate the walls.
Pereira's 10-year-old daughter, Tamara, is perched on her lap. The girl's mouth hangs open slightly. Her arms are bent, locked at the elbows.
There are other moms here, sitting beside their children who are around the same age and of similar affect. Many of them are in wheelchairs.
Partway through the meeting, Pereira speaks up. She wants to know if everyone is eligible for the money being discussed
The group looks to the speaker, Alessandra Hora dos Santos, who has been their matriarch and champion for years. They listen to her answers, hoping to hear that all their hard work has finally paid off.
Over the last decade, the women in this room have gone from feeling voiceless and powerless to being outright activists, banding together to do something that they might never have imagined. They are demanding that the Brazilian government compensate them for what they say was a failure to protect them from a notorious disease.
They want payback, they say. They want reparations for their children.
A weighty diagnosis
For Pereira, it all started in 2015 when she was in her early 20s and pregnant. "I did all the prenatals and everything was fine," she says through an interpreter.
But later, when Tamara was born, something wasn't right. Her head was too small.
The neurologist approached her and asked, "Mom, have you ever had Zika?"
The doctor was referring to a mosquito-borne virus that hijacks a protein critical for normal brain development. Like many children born to mothers infected with Zika while pregnant, Tamara had microcephaly — an underdeveloped brain. The doctor told Pereira that her daughter was unlikely to ever walk or talk.
"Many times, it affects not only the heads but the arms and legs," says Mardjane Lemos, an infectious disease physician at the Alagoas State University of Health Sciences, through an interpreter. "It affects hearing, sight."
When Pereira heard the news, "my world fell apart," she recalls. "When you plan a kid, it's not only the kid — it's about a whole life, a future, college, house, everything."
Pereira called her husband in tears, desperate. He comforted her, saying, "Calm down because God is the greatest doctor."
The medical visits began right away. Pereira took Tamara to weekly appointments that required a grueling overnight journey on the public bus to get from their rural residence to the city hospital. Later, Pereira would rush her daughter to the emergency room when things, suddenly, would go off the rails — like when the balloon helping to anchor Tamara's feeding tube inside her stomach would pop or she'd vomit to the point of dehydration.
As Iana Flor, whose son Pedro was also disabled by Zika, put it: "It's complicated because one day can be good and the next day it's like a bomb."
Still, despite the hardship and living off scant resources, Pereira was committed. "When you have a special child, you dedicate yourself totally to this child," she says.
Her husband worked as a construction contractor, paying for groceries and other home expenses. But Tamara was entirely Pereira's responsibility. "He expected me to take care of Tamara's needs — all the doctors, all the therapies, all the specialists," she says. [HAD SHE WORKED PRIOR TO TAMARA'S BIRTH? — I don't know]
Pereira acknowledges that she didn't have a lot left over for her husband and all his expectations that she cook, clean and take care of their daughter.
"I felt suffocated," she says. "A woman, when you are in a relationship, you sort of live for the other person. You stop having your own life."
So after 12 years of marriage, Pereira told her husband she was done. She and Tamara moved into a rental in a different neighborhood.
"I was all the time alone," she says. "It was really hard."
After the "end"
The isolation didn't last long. When Pereira took Tamara to physical therapy, she met other moms whose lives had also been short circuited by Zika. They found common ground in their caretaking struggles and financial difficulties, and they drew strength from one another.
All told in Brazil, some 3,300 "Zika babies" were born over a four-year period. The disease has disproportionately impacted poorer, rural families "because these regions lack sanitation," says Dr. Lemos. "Many of these women don't have water systems in their house," which means they often have to collect rainwater in storage containers that serve as ideal breeding habitat for mosquitos. "No one is going to throw water away even if there are larvae inside," she says.
The consequences for the families affected by the disease are long-lasting. "For them, Zika — it's not over," says Luciana Brito, a psychologist, researcher and co-director of the Anis Institute of Bioethics.
It's a story that plays itself out all over the world, Brito says — in big ways and small. A health or natural disaster befalls a community and they are all that anyone talks about. But quickly, people turn to the next tragedy elsewhere. For that original community, though, the challenge has only just begun.
In Brazil and elsewhere, Brito and her colleagues are exploring this disconnect between the official end of a disaster and the ongoing reality for those at the epicenter of the hardship.
"There is no end for the most affected people," says Brito, who works with communities long after the rest of the world has largely moved on. She and her team helped Pereira and the other moms form a community association to advocate for their needs. It's called Família de Anjos, or Family of Angels, and it's run by dos Santos.
Dos Santos points to a Brazilian idiom to explain the ongoing struggle that she and the other women — whom she calls "her moms" — must face. "We have to kill a lion a day," she says through an interpreter. "You conquer one thing and you already have to think about the next one. So every day we are killing lions here."
A fight for a home
The first lion the group confronted was home ownership. "If you have a house, you have quality of life, you have dignity," says Pereira.
In Brazil, low income families with children with disabilities receive priority for public housing, free of charge. But that wasn't happening for these moms. They made phone calls but Brito says the authorities never got back to them.
So on a hot day in 2020, Pereira joined a few dozen moms for a protest in front of a government housing office. Some held umbrellas for shade. All pushed their children in wheelchairs, wearing yellow shirts that said, "Microcephaly is not the end."
"We demand an answer," they cry out in one video taken that day.
"I won't forget this special day that we stopped the traffic for the benefit of our kids," Pereira says. "If you don't fight, if you don't show up, people think that everything's perfect. And it's not perfect at all."
Pereira says the protest was both empowering and humiliating. Some of their children were crying. She remembers people yelling at them, "Go back home, get some clothes to wash."
But it only took a single day before the women secured a meeting with the proper official who ultimately helped them secure housing for free. They were now homeowners.
Pereira was able to move into a ground floor apartment in a housing block outside of Maceió. The place is small but homey. "I love this apartment," she says. "It is mine. I didn't get it from any man. I got it from my own fight."
One day last summer, Tamara sits in her wheelchair in the living room. She has big brown eyes and an expressive face. Tamara isn't verbal but she's engaged. "This young lady, she's very cheerful and she likes to be around people," says Pereira.
From time to time, Pereira leans over to wipe a trickle of saliva off Tamara's chin.
There's a gentle knock at the door. It's Lenice do Nascimento, a dear friend of Pereira's who's in the building next door. That's the thing about living here — Pereira's no longer alone. Her neighbors are the mothers and children whom she fought alongside to get this housing.
In fact, when Pereira decided to finish her high school equivalency, it was do Nascimento who offered to take care of Tamara in the evenings so that she could complete her studies.
"It was a dream to me to be able to study," says do Nascimento through an interpreter, "but with a family, with kids, it becomes so hard and I couldn't do that. So I can do that for her."
Pereira flips through a couple of her school notebooks, each one filled with careful penmanship. "I never thought I would go back to school and finish," she says. "But now that I did, I feel so self-realized. I learned there is a whole world in front of me."
For the time being, Pereira earns extra money cleaning houses on the weekends, which is when another close friend looks after Tamara.
"These ladies, I call them my third arm," she says. "We are resistance sisters."
The women have become a crucial source of support for Pereira. The result is that she's feeling more in control of her life — a life that remains centered around her daughter.
"Before her, I was [an] extremely selfish person. I had this character of saying, you live your life, I'll live mine," says Pereira. "But now I live for Tamara. My daughter changed my life. She opened my heart that is now more sensitive to love and to forgiveness."
A demand for reparations
A few months ago, the sisters of resistance won an especially critical battle.
The women had ultimately reached an important conclusion — that none of this had to happen. The government, they say, could have introduced measures to keep mosquito numbers down and taught the community how to avoid exposure to Zika to prevent all the hardship that they've endured.
So they began demanding reparations for their children from the Brazilian government. They saw it as fair payback for all they've endured. They also wanted an apology.
"The Brazilian government failed to provide basic sanitation, health conditions, basic public policies to provide the essentials for people," says dos Santos. "Which makes the perfect condition for the proliferation of infectious diseases."
"These women have been neglected by the government," says Dr. Lemos. "I have no doubt of that."
"It's the recognition that these women matter," says Brito. "They were forgotten by the public authorities. And now, this bill [is] saying, 'You matter to us.' And the money, it's only a symbolical way to do that."
Dos Santos took the case directly to the Brazilian capital where she wore her favorite outfit. "I was with my yellow t-shirt," she says. "Yellow being the color chosen to represent the Zika virus, black trousers, high heel sandals."
Late last year, the reparations bill passed the Brazilian Congress. It then made its way to the desk of President Luiz Inácio Lula da Silva — where he vetoed it, citing budgetary challenges. Then, this summer, the Congress overturned the veto.
After nearly a decade of struggle, the bill became law.
Brazil has agreed to pay each child a onetime reparations payment of about $9,000 plus an additional $18,000 per year for the rest of their lives. The bill refers to this money as compensation for dano moral, which translates to "moral damage."
It's a huge win and an admission of wrongdoing at the highest level of the Brazilian government. Pereira has said the money will allow her to buy healthier food and maybe even get her own vehicle.
"It will bring more quality of life," she says.
Flor agrees. "This bill will be of great help for all of us moms," she says. And it will "give these kids some dignity."
Some of the moms were inside the National Congress Palace when the bill became law.
The women put their arms around one another, jumped up and down, and cheered.
Lina da Anunciação served as the interpreter for interviews conducted with Portuguese speakers.
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