This dispatch is part of a series focusing on children with zika syndrome and their families. To read more, please visit the blog: Zika: Brazil's Forgotten Families.
Every day, Kássia Consuelo Carneiro wakes up at 5 a.m. to get her son, Davi, ready.
Davi, almost 4, is one of many children in Brazil with Zika syndrome, meaning he has a range of disabilities and health issues. He does not talk, but he understands everything his parents and older sister say.
Going out with his mother is Davi’s favorite time, but for Kássia it is becoming more difficult as he grows from a toddler to a child.
In Brazil’s northeast, most public buses are not wheelchair accessible and Kássia said those that are often won’t stop because drivers see it as too much work to deal with someone in a wheelchair.
Kássia has taken to carrying Davi when they need to take the two-hour journey to his daily therapy sessions. But he is 12 kilos (26.5 lbs) and growing, and she is developing back problems. Soon, she will no longer be able to carry him.
Brazil’s Supreme Court was due to rule on a case this week that could have given families raising children with Zika syndrome access to more public services. But the court delayed the case, dealing another blow to struggling families.
In 2017, Davi and Kássia appeared in a video and a report by Human Rights Watch exploring the impacts of the 2015-2016 Zika outbreak in Brazil´s northeast. Now Human Rights Watch is reconnecting with some families to see how life has changed.
Davi’s microcephaly from the Zika virus – a condition where the skull and parts of the brain are not fully developed – gave Kássia and her husband Daniel access to subsidized housing. However, they now live much further from her mother’s house, daughter’s school, and Davi’s therapy.
Davi’s parents receive a small monthly government contribution of 998 reais (about US$250). The benefit is only available as long as neither parent is employed, so Kássia dedicates all of her time to Davi.
“I really miss going outside alone. But now my children need me more than I need myself,” she said.
Love for Davi shines through. Kássia describes her son as a sweet, tranquil boy who loves car books, lunchtime, and imitating his 11-year-old sister, Maria Clara.
Kássia’s favorite part of the day is what she calls a hora de estimular (“stimulation time”). She’s bought a wooden walker for Davi to reinforce his progress during therapy sessions.
Kássia relishes the moments she sees Davi making progress. Something as simple as accessible transportation, which would allow him to have more therapy sessions and more time for stimulation at home, could mean these moments come more frequently for Davi. If Kássia had more government support to raise her child, such as hours of personal assistance at home so she doesn’t spend all her time caring for Davi, it would result in higher living standards for the family as a whole. The Brazilian government should do more to help these families.