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Zolgensma (Credit: Playback)
Little Aysha Goerigk died last Saturday (26) in Americana, in the interior of São Paulo. The baby who had been diagnosed was Spinal Muscular Atrophy (SMA) came to mobilize a campaign to import the drug considered the most expensive in the world, which could save her life.
“We try our best, but we believe that God’s time is much greater than our desire to hold her in our arms,” said a statement on the Instagram profile created for the campaign.
“We ask that you pray for us and that God give us the strength to go through all of this,” says the family.
After completing a month of life, Aysha had trouble gaining weight. Therefore, the mother, Cristiane Teresinha da Conceição, sought out a doctor. The newborn had to be hospitalized after being diagnosed with SCI.
The rare disease affects the production of proteins necessary for the survival of motor neurons.
Medicine
Aysha’s family created a campaign to raise funds for the purchase of Zolgensma, a drug registered by the National Health Surveillance Agency (Anvisa) in August this year.
“Basically, the idea is this: you use a virus and, instead of the genetic material of that virus, you put the genetic material that the child cannot produce. The virus is then used as if it were a transporter to carry the genetic material to different cells and tissues of the child’s body ”, the neurologist from Unicamp Marcondes França explained to G1.
Since the child was admitted, the mother’s routine has changed and has been divided between time at home and most of the day in the hospital. “Today my home is here in the hospital. I am by her side all the time, I am not saddened to be in the hospital with her. My priority is to stay with her 24 hours a day, ”he said during an interview with EPTV in early September.
“Zolgensma modifies the patient’s DNA and creates a functional copy, in a single dose. Theoretically, we are talking about a cure for SCI type 1, although it is most likely that children continue to need multidisciplinary care, such as physical therapy and speech therapy, ”said Rodrigo Reis in an interview with G1.
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