"We have been forgotten", the mother of a child victim of zika

When the doctors informed Thamires that the son she was carrying in the uterus seven months ago was suffering from severe neurological malformations caused by the Zika virus, she tried to commit suicide by shooting herself in front of a bus in Rio de Janeiro.

"I did not want to think of anything negative for him, I just wanted to finish," sums up, in tears, this 29-year-old mother.

But the bus driver stopped on time and more than two Thamires, with his husband, Wallace, his relatives and his experts, blocks the daily silent struggle to raise a child with conbad zika syndrome, what is called the wide range of changes caused by the virus, which has generated a global health alert,

Miguel, aged two years and four months, suffers from "microcephaly, lysencephaly (smooth brain)," says he, "but that does not occupy one of the newspapers anymore."

"I think we have been totally forgotten," says Thamires. syndromal variant me Dandy Walker, which is a rare disease, kidney failure and epileptic seizures ", enumerates the young mother.It finishes the boy's bath, perfumes her and is about to give her the lunch: mashed potato of pumpkin with olive oil.

Despite strabismus, Miguel does not have compromised vision and reacts to known voices, but he can not walk., sits or raises his head His parents follow a strict – and expensive – care routine that includes more than six remedies every 12 hours and frequent hospitalizations.

"It's a difficult and exhausting routine, families are hiding their children for that society does not see them. And that's not what we want, we want to be part of society, "says Wallace, Miguel's father.

He works as a computer technician at night to pay bills and health plans Private Complementary to the Complex

– Missing Parents –

Transmitted by the Aedes aegypti mosquito, the Zika virus outbreak, which affected the city's population In 2015, Brazil caused an exponential increase the number of infants with microcephaly and other neurological disorders, particularly in the poorest north-eastern region of the country.In the period from November 2015 to May this year, the Ministry of Health recorded more than 3,000 cases of zika infection during pregnancy

Since then, the federal government has taken various measures to help the mothers of these children – access to social housing or pay a minimum wage to the most vulnerable families. p – but they often have difficulty accessing the services of their municipalities due to lack of information and bureaucratic obstacles. "

" The system was designed for Thamires complains of bureaucracy. From the beginning, she and Wallace partnered with other families to trade. information and collective pressure on the authorities to obtain the attention to which they are legally entitled, such as access to the home where they have just moved, in the metropolitan area of ​​Rio de Janeiro.

But Miguel's standard of living and attention are not the rule, they admit, especially for other mothers who have been abandoned by their companions.

"Miguel made us fight not only for him, but for families.

The main difficulty they face is not dealing with highly complex treatments, but only basic care in pediatrics

"In the basic health system, the doctor is usually not aware of conbad syndrome (zika), so he can not provide basic pediatric care. Because that same baby who has conbad syndrome, which has microcephaly, will also have a toothache, will have all the normal problems of another baby, "says Wallace.

-" Living Today " hui "-

Both they admit that they would like to have more children, but they know that Miguel's attention needs resources, so the plan is unachievable, at least until Thamires completed the nursing course that he had abandoned and resumed, and be able to work on it

while Miguel is the only protagonist.Where they can, the parents take him to parties, to the beach.On his last birthday, they held a party and invited other mothers of children with microcephaly

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