Sometimes life can change from one moment to the next. An unexpected news, a sudden event, something that goes wrong without warning … This was the case of Natalia Torterola and Enzo Gamarra, the parents of little Emma diagnosed with Spinal Muscular Atrophy (SMA) at just 5 months.
This was just the beginning of their struggle, of tests and studies that tried to give a name to what happened to the little girl. The results of those tests took months and her parents continued to search for a solution for their daughter. Once they were given the signs of the diagnosis, they decided to give Emma a two-dose vaccine every four months on the recommendation of the doctors. The problem with this vaccine is that it would not stop the disease, it would only make it progress more slowly and that was not enough.
A $ 2.1 million treatment
Fear and insecurity invaded the little girl’s parents, they contacted a group of parents of children with SMA and discovered a more effective treatment: Zolgensma. This medicine replaces the SMN1 gene that causes the disease. It is a drug approved by the FDA in the United States, but it was not available in Argentina, his native country. The treatment, produced by the Swedish laboratory Novartis, has a cost of 2.1 million dollars.
Desperation and nerves at not being able to assume such a high cost made the little girl’s parents not consider the idea of starting a campaign on social networks. When the baby was admitted to the emergency room and tracheomized, it was the turning point where they realized they needed help. Emma was unable to breathe on her own and suffered a cardiorespiratory arrest.
I want to tell you My Story …
I invite you to see this beautiful video made with a lot of love where I tell you about my struggle.
I want to tell you my story …
I invite you to see this beautiful video made with love where I will tell you about my struggle.#todosconemmita pic.twitter.com/1H0Sim9fMx
– Todosconemmita (@todosconemmita) February 12, 2021
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Santiago Maratea, the influence who managed to raise the money for the medicine
They were very complicated days in the family, who They started the campaign that could put them in contact with Santiago Maratea, a young man influence who decided to do everything in his power to raise the money for the drug.
Dozens of celebrities contributed to the initiative promoted by Santi and parents soon began to see great advances. In April, Maratea announced that they had achieved the objective of the campaign and they already had the money needed for Emma to begin treatment. With a single application, Zolgensma would complete the gene that the little girl was missing in order to lead a normal life.
Emma received the drug successfully, a process that was shared by the young man influence minute by minute. “They had to find two ways to put the medicine and it took them about an hour to find the second, but they have just found it, so they are about to infuse it,” Santiago shared on his social networks. “Wow, what it cost us to get this drug. I love them and they re bank ”, he added. Emma has already received the treatment and now a long and happy life awaits her thanks to all those who contributed to the cause. Especially Santiago Maratea, his guardian angel.
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