BETIM, Brazil — For the past three years, a Brazilian teenager has been lying in a vegetative state in a hospital 20 hours away by boat from his distraught family.
They live in the middle of the Amazon rainforest — and their fight to have him returned home has been unsuccessful, due largely to financial straits.
They were living near the Unini River, close to the cities of Barcelos and Novo Airão in the state of Amazonas, Brazil.
“A researcher specialist in bats came here and told us that bats make their colony and like to focus on just one victim. So, it is likely the infected bats chose Mateus’ house and stayed overnight. The children were attacked multiple times, 20 times each one. The father had more than a hundred bites in his life, but thought it was something normal. No one told him it was dangerous,” said Satya Caldenhof, a researcher at the Education International Institute of Brazil who has been living in Manaus for 15 years.
Mateus, who was 14 at the time, has been in the ICU of the Instituto da Criança do Amazonas, a children’s hospital in Manaus, the capital of Amazonas state, ever since.
The State Department of Health of Amazonas said in a press release: “The child is receiving all the necessary medical care.”
After his initial treatment, which was deemed a success, Mateus was noted in media reports as being only the second person in Brazil and among 10 in the world to have been cured of rabies after undergoing what is known as the Milwaukee protocol. Mateus was placed in an induced coma to protect his brain, but now he is in a vegetative state. He is immobile, fed through a tube and moves only his eyes.
His parents’ fight for Mateus to be allowed to return home and continue his treatment there has been unsuccessful, owing in large part to the family’s dire financial situation.
They are unable to pay their bills and to eat comfortably. For the rent and electrical bill alone, Mateus’ mother, Débora dos Santos, and his father, Levi da Silva, pay Brazilian Real 1,000 ($183) every month. But considering that is equivalent to the Brazilian minimum wage, the family cannot afford other medical expenses that Mateus will need, including in-house physiotherapy.
Caldenhof, who has been closely following the family’s struggles, set up a crowdfunding campaign to help with expenses. The goal is to raise at least 30,000 Real ($5,500) to buy a new house, room adaptation and food. With money raised so far, the family was recently able to buy a small house. Now, the fundraising efforts are focused on supplying Mateus and his family with the necessary room adaptation and groceries.
Remote location adds to family’s difficulties
In order to speak with Levi, a call must be made to a public phone located near remote communities close to the city of Novo Airão, where Mateus’ parents want to move him. The location is far away from the phone, which has specific hours for use. Also, it doesn’t always work, as the communication system in the middle of the Amazon rainforest is unstable.
However, living in Novo Airão will be better than living in Manaus, said Levi.
“The cost of living over there is cheaper, we can go fishing, we can make flour. It is going to ease our situation. We can stop paying rent. The electrical bill also is cheaper. If he is going to be OK, God knows. If he will not be OK, God knows it, too. We just want at least to be close to him, for as long as God allows,” said Levi.
Last December, Mateus’ parents got the sudden news that their son would be transferred to the hospital ward, which they knew would expose him to COVID-19. “It was a big mistake made by the government of Amazonas and by the hospital,” Levi said. The hospital wanted [Mateus’] ICU bed for people suffering from COVID-19.
Caldenhof arranged for Mateus to be returned to the ICU days later.
The pandemic lockdown has made the life of Levi and his family all the more difficult.
“We are getting, surviving. It is God who sustains us. There are times we have that depression, feeling pain, feeling bad. It is hard. The more time passes, the more we are hopeless.”
(Edited by Judith Isacoff and Fern Siegel)
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