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A Goiânia couple is struggling to pay for the treatment of his son, 9-month-old Davi Lucas Vale of Moura, who suffers from spinal muscular atrophy (SMA), a genetic disorder that causes marked muscle weakness and a difficult diet. To have a better quality of life, the baby must take six doses of a drug called Spinraza, at a cost of $ 372,000 each. After seeking help, the prosecution went to court, which ordered the transfer of the drug to the boy. (Correction: G1 erred in saying that the Crown denied having provided the drug for the baby and that the Municipal Health Secretariat (SMS) was responsible for pbading it on, where applicable (SES-GO), the Ministry of Health of Goiás State (SES-GO) and the Goiás State Department of Health (SES-GO) (19659005) December 10 , Judge Jehovah Sardinha Moraes issued a preliminary injunction, compelling the Goiás State Department of Health (SES-GO) to bear the costs of the drug.
The G1 contacted SES-GO by e-mail at 7:12 pm Wednesday (9) and is waiting for the return.
Letícia Moura, housewife, declares that the illness was diagnosed in the child a few days after his birth when she had to be hospitalized
"Too difficult to see it like that. was quite normal, had nothing, with one month and 28 days everything was started. He was hospitalized for pneumonia and began to notice that he was very hypotonic, that he had no firmness in the neck, as he did not do, "he reveals.
Since then, he has been living in bed at home, so that the boy can sit, eat and breathe better, he needs medicine.Carpentier Ronaldo Vale Silva , boy's father, says son does not get medication
"They close their eyes to life, it's not a financial problem, it's for life. "Because a life has no value. he says.
"I have learned a lot to love David and he is an instrument of blessing in our lives, no matter what situation he lives in and is today."
Due to the situation of the boy, where he must be with two air conditioners connected 24 hours a day.This gave the family the energy bill of the last two months.
Even with all the difficulties, the couple does not lose hope in giving a better quality of life to the child.
"In this world, there are still people with a good heart, and that motivates us to see David, to talk to him, to make a joke and to look at him, this expression in his eyes, to that smile is that it motivates us every day to run after fighting for this medicine, "said the carpenter.
See other news of the region in G1 Goiás .
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