Maria Gabriela Silva Alves (“Gabi”), age 2, with her mother, Maria Carolina Silva Flor (“Carol”), at their home in Esperança, Paraíba state, Brazil in 2018. Gabi was one of thousands of children born with disabilities caused by exposure to the Zika virus in utero during the 2015-2016 outbreak.

© 2018 Joselito Alves dos Santos
 

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.

Families raising children with Zika syndrome face yet another delay in their struggle to secure the help they need after Brazil’s supreme court withdrew a significant case from its agenda.

The case, which was filed in 2016, could expand access to public benefits for families raising children with disabilities linked to the 2015-2016 outbreak of the mosquito-borne Zika virus in northeastern Brazil.

The court was scheduled to decide the case on May 22, but late last week, advocates learned the court removed the case from its agenda without setting a new date to issue its ruling.

My colleagues and I have interviewed dozens of families raising children with Zika syndrome in recent years. They’ve told us how they struggle to care for their children without enough support from the government. As children with Zika syndrome grow older – many of them turning 3 or even 4 this year – their needs evolve to include nutritional supplements, surgeries, expensive medicines, early stimulation to increase learning development, wheelchairs, and braces, among other things.

Many parents of children with Zika syndrome find it impossible to balance caregiving with work outside the home, and barely manage to make ends meet living off the modest monthly stipend of 998 reais (about US$250) they receive from the federal government for having a child with a disability.

These families have been fighting for their children’s rights for years, petitioning authorities to guarantee access to the services their children desperately need. They shouldn’t have to fight so hard. The court’s decision to remove the Zika case from its agenda is yet another letdown, a sign that they have to keep waiting and keep fighting.

I’m deeply disappointed for these families, but their stories need to be told and we’ll keep posting stories in the coming weeks.

Brazil’s supreme court should set a new date for its ruling without delay. Brazilian authorities at all levels of government should expand services for children with Zika syndrome and simplify bureaucratic processes that are delaying their access to care.

The Zika outbreak made headlines around the world, but now the families and children affected by the disease seem invisible. Neither we, nor Brazilian authorities, should forget about them. They need us.