the Vanguarda link back to tell that families in the region face a challenge to save the lives of children with a rare disease, they need a medicine that costs more than 10 million reais and even resorting to justice, families are getting treatment through SUS it was not in a wheelchair that Renata imagined seeing her son growing up the diagnosis of spinal muscular atrophy changed the life of the family that lives in São José dos Campos from then on he started doing rehabilitation at the time there was no type of medication so that he could evolve better and it actually ends up being torture for Cauã because he has to go to the hospital he has to go to a surgical center to receive anesthesia in the he doesn't go to school he doesn't have contact with his friends, right then he can't be visited either speaks known spinal muscular atrophy Oi cami is a rare degenerative neuromuscular disease that affects one in 11,000 babies bes and that can lead to death, Cauã currently takes a drug called spiraza that is already provided by the SUS its function is to stimulate the production of the protein but it does not solve the genetic problem so much that the patient needs to take another drug called zolgensma continuously it is considered the revolutionary for the treatment of breast as it changes the patient's DNA in many cases one application is enough to end the degenerative effect the drug became known as the most expensive in the world since its estimated price is about two million dollars the equivalent of about 11 million reais last year he received the registration from Anvisa but his distribution did not reach the SUS many families turn to justice to Renata who in addition to Mãe do Cauã is a lawyer she asks that the state of São Paulo provide the remedy This court order there was not complied with they took more than three months to stay to give an answer about this decision São Judicial State of São Paulo I ask that everyone there pray so that Cauã really receives this medication soon because it is a progressive degenerative disease and it trains and leaves the child increasingly deformed she hopes that the decision will be the beginning of a process that facilitates the distribution of the medication to other people who need it, it has been a month since this family from Taubaté received a diagnosis from the hotel of a year and two months in the legs.

right And then there's a variation of the baby's body to sell, only he arrived, right then, a person there with 10 times to the limbs Nothing was also a very big blow, right, it's just that we couldn't even process what was happening, right because it was absorbed perfect development everything is going great all of a sudden he has a serious degenerative disease so they got organized they started an online crowdfunding to collect funds for co buy the medication but they know that reaching 11 million will not be easy so I hope that the path to justice will be faster and financial neither Cocais medicine nor the whole family well time all the modules that I would be able to share every day we learn one little bit of after so much struggle, Cauã keeps the hope that everything will work out and that one day he will be able to do what he can only see his friends from school do I want to play is to play Than play to run and you will succeed Cauã will be all right, see let's get the answer people the state government informed that it has not yet been notified about the decision in the case of the Cauã drug the health secretary also informed that there is no Anvisa authorization or scientific evidence for the drug to be used used in patients over 2 years of age, but Renata has attached to the file cases of children over 2 years of age from other countries who have taken the drug and a document that of the laboratory that produces the medicine that provides for its indication by weight and no longer by age acting the suffering of these families are generate is the first time that we talk about the disease here, a rare disease You are a father you are a mother you he has a son with this disease Rare there is a drug that can save his life but it is the most expensive drug in the world it costs 10 11 million reais who has this money people because it is a race against time, right, an anguish for that that these people make a crowdfunding right Open in campaigns on social networks and You have to go to court to try to save the child's life, right, anyway, it's a lot of suffering is separated



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