A union of forces to help a baby diagnosed with Spinal Muscular Atrophy type 1 (EBF). Little eight-month-old Sofia Helena really needs the contribution of Brazilians to raise the R $ 12 million that will be used to fund the Zolgensma drug that stops the progression of the disease whose great risks are paralysis, breathing difficulties and even death.
As part of this campaign, the family was able to donate a Toyota Etios zero kilometer car that will be placed as the main prize in a raffle. Tickets will be physical and online. More information at www.amesofiahelena.com or on the social networks @amesofiahelena.
In addition, family members also managed to mobilize two great idols for this cause. The player Neymar Júnior donated two autographed team shirts that will also be raffled. The singer Sorocaba, on the other hand, lent his image to strengthen donation requests for the entire community.
Up to November 5, R $ 6,540,640 of the expected R $ 12 million had been collected. Money that came from the help of thousands of people. With the donation of the car the expectation is to expand the collection soon and give a better quality of life to the baby. The family of the little girl who was born in the municipality of Saudades (SC) runs out of time after the financial contribution that will be used to purchase the medicine.
Manufactured by the pharmaceutical group Novartis, Zolgensma is a gene therapy based on an adeno-associated virus vector, which addresses the genetic cause of AME, replacing the defective or absent SMN1 gene to stop the progression of the disease. A single intravenous infusion results in the reaction of the motor neurons of the SMN protein, which improves muscle movement and function and the survival of children with SMA. For its effectiveness, it is essential that the patient receives this medication before reaching the age of two. Little Sofia Helena was born on July 26, 2019.
Gene therapy is not yet available in Brazil and purchase is only possible in the United States. In addition to being distant, the value is very high: a single infusion of the drug costs US $ 2.1 million, equivalent to about R $ 12 million.
There are other ways to help besides the raffle
In addition to the raffle, there are other ways to contribute with Sofia Helena. Her parents João Marcos Helfer and Silvana Porte mobilized and opened several official channels for donations. It is important to know the details of this story to raise awareness and contribute.
Social networks:
https://www.instagram.com/amesofiahelena/
https://www.facebook.com/amesofiahelena
WhatsApp to send the voucher numbers:
(49) 99932-9799
These are the official videos of the girl on Youtube:
This is the link to donations via PicPay:
http://picpay.me/amesofiahelena
This is the link to Vakinha Online: