Little Júlia Maria, two years old, who won in court the right to receive the most expensive medicine in the world, showed improvement 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 already showed some improvements in her condition.
According to Jozelma, she told Terra, her daughter began to move her legs and began to move around. “Júlia moved her legs differently. It wasn’t the first time there, because she was already moving her legs, but she didn’t make those movements of holding her legs against gravity”, she explains. Despite moving, Júlia was unable to hold her limbs up, as she did in the video.
Excited, the mother hopes for even more progress in her daughter’s condition, who needs help to move and breathe. “It was exciting, I believe Júlia will do even more. Right now, we are very focused on seeing her well,” she said.
Staying in Curitiba, the mother and daughter will find out on Friday, the 22nd, whether they will be able to return to Fortaleza. “[Estamos] afraid of the reaction of the medicine, but faith in God, everything will work out and anxious to return home”, he added.
Now, the next steps in Júlia’s care include physiotherapy, speech therapy, occupational therapy, in order to achieve further development in her condition and movements.
What is AME?
Júlia Maria has spinal muscular atrophy (SMA), a disease considered rare, which is degenerative and has no cure. According to the Ministry of Health, AME is passed 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, for example breathing, swallowing and moving.
SMA varies from type 0, before birth, to 4, the second or third decade of life, depending on the degree of muscle impairment and the age at which the first symptoms appear.
Most expensive medicine in the world
This 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 medication was administered last week, in Curitiba.
Zolgensma has a positive impact on breathing, chewing, tongue movements, swallowing, gag reflex and speech articulation in people with type I SMA, according to the Ministry of Health.
The medicine is administered in a single dose intravenously, unlike other medicines already incorporated into the SUS for types I and II of SMA, which are administered periodically.
