Júlia Maria received a dose of Zolgensma, a R$6 million drug, to treat spinal muscular atrophy (SMA)
Two-year-old Júlia Maria, who won in court the right to receive the most expensive medicine in the world, showed improvements the week she received her dose of Zolgensma. The medicine costs around R$6 million and is used to treat spinal muscular atrophy (SMA).
Júlia and her mother, Jozelma Silva, traveled from Fortaleza (CE), where they live, to Curitiba (PR), where the girl took the medicine. After receiving the single dose, she has already shown some improvements in her condition.
According to Jozelma, he said Earth, the daughter began to move her legs and began to move. “Júlia moved her legs differently. It wasn’t her first time there, because she already moved her legs, but she didn’t make those movements to keep her legs against gravity”, she explains. Despite her movement, Júlia was unable to support her limbs, as she did in the video.
Excited, the mother hopes for further progress in her daughter’s condition, who needs help to move and breathe. “It was exciting, I believe that Júlia will do even more. Now we are very focused on seeing her well”, she said.
Remaining in Curitiba, mother and daughter will find out on Friday the 22nd if they will be able to return to Fortaleza. “[Estamos] Afraid of the medicine’s reaction, but faith in God, everything will work out and anxious to go home,” he added.
Now the next steps in Júlia’s care include physiotherapy, speech therapy, occupational therapy, in order to achieve further development of her condition and movements.
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What is AME?
Júlia Maria suffers from spinal muscular atrophy (SMA), a disease considered rare, degenerative and without cure. According to the Ministry of Health, AME is transmitted from parents to children and interferes with the body’s ability to produce a protein essential for the survival of neurons that control movements, such as vital involuntary gestures, such as breathing, swallowing and movement.
SMA ranges from type 0, before birth, to type 4, in the second or third decade of life, depending on the degree of muscle impairment and the age at which the first symptoms appear.
The most expensive medicines in the world
Last September, Federal Supreme Court Minister Cristiano Zanin ordered the Union to supply the drug Zolgensma to Júlia Maria. The medicine costs around R$6 million. The drug was administered last week, in Curitiba.
According to the Ministry of Health, Zolgensma has a positive effect on breathing, chewing, tongue movements, swallowing, gag reflex and speech articulation in people with SMA type I.
The medicine is administered in a single dose intravenously, unlike the other medicines already incorporated into the SUS for SMA types I and II, which are administered periodically.
Source: Terra
Ben Stock is a lifestyle journalist and author at Gossipify. He writes about topics such as health, wellness, travel, food and home decor. He provides practical advice and inspiration to improve well-being, keeps readers up to date with latest lifestyle news and trends, known for his engaging writing style, in-depth analysis and unique perspectives.
