The boy Miguel Teixeira da Luz, a year of age and 7 months, will continue without remedy the effects of Spinal Surgical Atrophy (AME) effects, a 5 month diagnostic disease, Age. Two weeks ago he was in hospital at the Seara Children's Hospital for Bem in Lages for bacterial infection in the tractatics.
In August, the judge decided that Spinraza doses should pay for the State and the Corporation. The cure should be applied to the four attack doses and then every four months for maintenance to the end of life.
Each dose of the drug, imported from the United States, costs $ 300,000. With the decision of August, the deadline was one month to start treatment. The family never got the medication and the baby continued to suffer from the detrimental effects of the disease.
Everyone was surprised by a new decision. The judge for the Youth and Youth Court, Ricardo Alexandre Fiúza, sent for the judgment on December 1
The decision determines family decision
Tuesday (8). The feeling was not impotent, especially as he was engaged in his son in another of the uncertain hospitals, which could be avoided if Miguel was getting dolls of Spinraza, she said.
Cristina explains that she is talking to mothers from other cities, who have the same problem, and who report that the medication has an effect and that it improves the quality of life. The family does not know what criteria were used for the decision. Previously, when the first application was refused, the explanation was that there is no scientific evidence to create the drug's efficacy.
Camila Duarte, a pediatrician, attaches to Miguel and prescribes the medication, which says that all patients need to use atrophy, which does not cure Spinraza, but delays the symptoms. Next Tuesday (15), the family organizes a protest outside the Nereu Ramos Forum, in Lages, at 3:30 p.m., due to the refusal of the sentence.
What is AME
Muscular Spinal Atrophy Is a neurodegenerative disease (AME) is a preventive autosomal legacy, ie both parents, father and mother need to have the gene of the disease and that the same gene at the embry from each of them. Due to weakness and progressive muscle atrophy, SMA reduces the simple voluntary movements such as keeping the head, sitting and walking.