Baby dies with muscular atrophy that mobilized a campaign to try to import medicines of about R $ 11 million in Americana | Campinas and Region

The death announcement was made on the Instagram profile created for the fundraising campaign. “We try our best, but we believe that God’s time is much greater than our desire to hold her in our arms.” The funeral will take place at the Saudade Cemetery in Americana.

“We ask that you pray for us and that God give us the strength to go through all of this,” says the family.

Aysha was born about five months ago. After completing a month, the mother, Cristiane Teresinha da Conceição, noticed that her daughter was having difficulty gaining weight and took her to the doctor. With the diagnosis confirmed, it was decided to hospitalize the newborn to preserve the clinical status.

SMA interferes with the production of a protein essential for the survival of motor neurons. Without it, patients lose muscle control and strength, have difficulty moving, and even lose the ability to breathe.

A show scheduled for this Saturday and that would raise funds for the importation of the drug was maintained by the production. The drive-in, which will feature country musicians, pagodas and DJs, will now pay tribute to Aysha.

According to the director of the production company, Carlos Martins, the idea is to revert the money to an entity that supports families with members who have SMA.

Martins said the company will also make the amount available to Aysha’s parents, should they need help. The drive-in is scheduled for 5 pm at the American Industrial Fair (Fidam).

The drug that the family needed to buy is called Zolgensm and was registered by the National Health Surveillance Agency (Anvisa) in August this year.

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 house 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 be with her 24 hours a day,” he said during an interview with EPTV In early September.

Unicamp neurologist Marcondes França explained in the report that the treatment with Zolgensma is innovative.

“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. Then you use the virus as if it were a carrier to carry the genetic material to different cells. and tissues of the child’s body “. Review the story below.

In an interview with G1 Science and HealthPediatric neurologist Rodrigo Reis, a member of the clinical staff of the ABC School of Medicine, explains that SCI is a progressive and degenerative neuromuscular disease that had no treatment until recently. “SCI is not reversible and progresses until it reaches the respiratory muscles of the patient,” he says, and says this may change with the use of Zolgensma in infants.

“Zolgensma modifies the patient’s DNA and creates a functional copy, this in a single dose. Theoretically, we are talking about a cure for SCI type 1, although it is most likely that children still need multidisciplinary care, such as physiotherapy and speech therapy”, He says. Kings.

Watch the EPTV 1 Campinas reports this Saturday