Boy Miguel Teixeira da Luz, aged 1 year and 7 months, will continue without treatment delaying the effects of Spinal Muscular Atrophy (AME), a diagnosis of a disease 5 months of age. Two weeks ago she was hospitalized at Seara do Bem Children's Hospital in Lages for bacterial tracheostomy infections.
In August, the judge pointed out that the State and the Municipality had to pay dose of Spinraza. The cure should be applied to four doses of attack and then every four months for retention until the end of life.
Each dose of the drug, imported from the United States, is worth $ 300,000. In August's decision, the deadline is one month for the treatment to begin. The family never received the drug and the boy continued to suffer from the degenerative effect of the disease.
A new decision was caught by everyone by surprise. The Court of Youth and Youth judge, Ricardo Alexandre Fiúza, filed a judgment request on December 1
The decision takes families by surprise
on Tuesday (8). The feeling is unfamiliar, especially when she joins her child to another countless hospitals, which can be avoided if Miguel receives a dose of Spinraza, she said.
Cristina explains that she talks to mothers from other cities, facing the same problem, and reports that the drug has an effect and improves the quality of life. The family does not know what criteria is used for the decision. Previously, when the first request was rejected, the explanation had no scientific evidence to prove the effectiveness of the drug.
Pediatrician Camila Duarte, with Miguel and prescribed the drug, states that each patient with disruption should use Spinraza, which can not be treated, but the symptoms are delayed. Next Tuesday (15), the family is conducting a protest outside the Nereu Ramos Forum, at Lages, at 3:30 pm, due to rejection of the sentence.
What is AME
Spinal Muscular Atrophy (AME) is a neurodegenerative disease with an autosomal recessive inheritance, meaning that both parents, fathers and mothers, have a gene for the disease and the embryo inherit the same gene from each other. Determined by causing weakness and progressive muscles of disruption, SMA weakens simpler voluntary movements such as head-to-head, sitting and walking.