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Cauã was born on August 8 from a normal job. . The mother of the child, the official Aline Mara, aged 31 and residing in Vitoria, explains that the son was born without intercurrence and that he left the hospital the same day.
"My mother, who is a doctor, noticed that he was still very soft and that he was not squeezing his neck, we went to get him We did a series of tests and eventually an electromyography was performed, which showed the AME, but this disease, by medical protocol, is confirmed after a genetic test.I can not wait to confirm the type of TEA, "said Aline. [19659002] In the kitty, the family has set a goal of 3 million rand Aline explains that six doses of Spinraza are recommended in the first year of life of children diagnosed with the disease and therefore the definition of value The drug is approved by the National Health Surveillance Agency (Anvisa), but is not yet available in Brazil's Unified Health System (SUS)
. day, R $ 20,000 was collected. "Although we are not sure of the type of harm adie, but knowing that she is degenerative, we must run against time so that we are already on the right track when confirmation comes out. There are things we never plan in life. When we have a child, but when we see so many people in solidarity and willing to help, it gives us a little comfort and strength to continue, "says Cauã's mother
the boy's mother said that he had not yet tried legal recourse to pay for the treatment, because they depended on the confirmation of the genetic test to know the type of disease. "With the test in hand, we can go to court, because the doctor will prescribe how many doses will be needed and how they will be applied. "We are opening the campaign because we can not waste time.If we finally get help from Justice without having to use the money, we will think of a way to give the amount collected to families who are in the same situation, "he says.
Kitty
Interested in helping the kitten created by the family, click here and donate. "This drug will help fight the progression of the disease, slowing the loss of body movement, especially breathing, the main concern at this time." Disease
Also known as AMS, spinal muscular atrophy affects about one in 10,000 children born.This is a degenerative genetic disease that causes motoneuron problems and leads to progressive muscle weakness.This can be manifested both in the first months of life and in adulthood.
In a short time, the disease can prevent the patient from doing simple things like sitting without badistance or breathing without the help of because it is also badociated with respiratory failure
ame
musculoskeletal atrophy
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vitoria
musculoskeletal atrophy
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