the story behind the viral campaign to raise two million dollars

“Emmita is a baby who smiles every day. I think he took more advantage of daddy. Her she is a recontra fighterLook, Emma almost left us four times. And I always say if I were her I would have thrown in the towel a long time ago, but she wanna fight her, how are we not going to fight her, “she said Bugle Natali Torterola, the mother of the baby, on the daily effort of her daughter.

Emmita is only 11 months old and she already knows what fighting is all about. Spend your days between cables, devices and professionals who accompany her and her family to move forward. He has daily sessions of one hour of kinesiology, one hour of speech therapy and 30 minutes of swimming pool to strengthen the muscles. Plus, he goes through the 40-minute weaning process, three times a day.

This baby Chaco has type 1 spinal muscular atrophy (SMA), a disease he inherited from his parents, since Natali and Enzo have the gene. This affects its development, mainly attacking the motor part.

“You don’t have the strength to breathe or eat -Detail Natali-. Not moving well either, which is why Emma doesn’t have head control. She can’t move her head on her own, she can’t sit, she can’t roll, and let’s not even talk about walking. “

What is spinal muscular atrophy (SMA)

Spinal muscular atrophy is a genetic disease that attacks nerve cells called motor neurons found in the spinal cord. These neurons communicate with voluntary muscles, which are the ones that humans can control, such as those in the arms or legs. As these neurons are lost, the muscles weaken. It can affect the ability to walk, crawl, breathe, swallow, and control the head and neck.

There is a family trend for SMA. Parents usually have no symptoms, but carry the gene.

Many types of SMA are known and some of them are fatal. Life expectancy depends on the type and how it affects breathing. There is no cure. Medication and physiotherapy only treat the symptoms.

The day that everything changed

Little Emma has developed based on what is expected for a baby her age. Everything was going on until, at the age of seven months, something changed everything.

“She was perfect even at seven months and for bronchial aspiration He entered the custody with a cardiopulmonary arrest and from there we did not leave until 40 days later, ”says the mother, lowering her eyes and with the anguish of this hospitalization of her daughter still on the surface.

-What was the path after this diagnosis?

-When they give me Emma’s diagnosis, I ask for a transfer to Buenos Aires – since they live in Resistencia, Chaco – to do a second consultation. I was aware of the existence of the drug Spinraza; she was on this treatment. I am not against SpinrazaI’m grateful because before she couldn’t turn her head or raise her arms, now she can. But I wanted to take it a step further and I started to find a drug that works on Emma’s faulty gene and we found out Z according to.

– What did they tell you about this latest treatment in Argentina?

– I contacted the laboratory but, at not be approved in ArgentinaI can’t go to my social work and say “I want this medicine”. So when I spoke with someone from the lab (Novartis) I said, “I’m giving you a crazy idea, what if I get the money?” Without even thinking that all of this was going to happen, of course. The answer was that in that case we could buy it. And when Emma takes a bronchial aspiration, she enters the guard, there we say to ourselves: “Well that’s it, let’s start the campaign.” And that’s how he suddenly came out. When I told the doctors about it, they agreed, they found out about the drug and I hope we get there soon (at two million dollars).

How the viral campaign started

El influence Santiago maratea he contacted Natali to find out more about Emmita’s case and to assess whether he could collaborate in any way with her and her family.

Previously, Maratea had made another solidarity fundraiser on social networks to obtain two ambulances for the Wichi community of Salta. Too had managed to raise 8 million pesos in one day to save the NGO Mothers Victims of Trafficking from eviction.

After several days of analysis, Maratea rose to the challenge and put the campaign on her shoulder. #TodosConEmmita, hashtag with which she is known on social networks. This is how he began to encourage his followers (supporters) donating $ 300 to help the cause.

Santiago Maratea’s strategy

With different digital strategies, ranging from viralizing his message on social networks to making contact with famous Argentines to give visibility to the problem, Santiago Maratea has already succeeded in raising funds – according to the last bet. up-to-date downloaded from its networks a total amount of $ 924,030,332. He is one step away from reaching $ 1 million, which would be 50% of the amount needed to buy the world’s most expensive drug.

Now Santiago’s goal is to reach the most high profile and famous clan in all of the United States: “Las Kardashians”.

For this, the influencer stayed in Miami, where he noticed that his Instagram stories had more reach than in Argentina. From there, he seeks that the request for collaboration to help this baby is even more massive and globalized.

The viral #TodosPorEmmita campaign has spanned China Suárez to Wanda Nara, who has lived abroad for years. He has already scoured thousands of profiles of celebrities, actors, media and digital content creators looking to collaborate with the cause.

The dream of Emmita’s parents

“Although many tell us Emma won’t work, we hope she will. Every father hopes that his daughter will be able to walk, run, play. This is our dream that Emma is no longer connected to any of these devices and we can go out for an ice cream, do simple things like go to the square and play, ”he says. Bugle Natali Torterola, the mother.

“You complain about so many things. But we We just want Emma to be alright. I learned that everything else is secondary, ”Natali concludes with a smile that expresses peace.

Natali and Enzo do not give up hope. They believe Emmita’s case could set a precedent for more visibility and knowledge about the disease and for there to be more support from the state. Meanwhile, Emma smiles and does her daily exercises. It’s time for the pool session. Here there is no time to waste, you only win, I really want to keep fighting.

NS