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A crowdfunding campaign on the Internet, which mobilized all of Chile, raised more than two million dollars needed to buy the most expensive medicine in the world for a baby with a rare disease.
The announcement was made through the social network Instagram by the parents of the three-month-old baby, known as Rafita, who was born with spinal muscular atrophy, the effects of which can be counteracted with a Swiss medicine, Z according toma, launched in 2019 at a price of 2.1 million dollars (1.7 million euros).
Shortly after knowing the diagnosis, when the newborn was two weeks old, the parents of Rafita, a native of Bíobio (south-central part of the country), launched the “Save or Rafita” campaign through social networks.
“We broke, it broke our hearts, but we do not stop because our Rafita needs us. He is fighting to live and we are giving him everything he needs to get it,” wrote the baby parents at the beginning of the fundraising campaign.
The campaign quickly went viral on social media and then went on to national television, accompanied by a photo of the baby connected to a fan.
Several Chilean public figures joined the campaign, such as the golfer Joaquín Niemann and an opposition deputy who even managed to get the Chamber of Deputies to discuss in a special session the situation of children with spinal muscular atrophy.
Neurological disease of a genetic nature, spinal muscular atrophy is considered a rare disease and in the most severe cases causes death in the first years of life.
The disease manifests itself with a progressive loss of muscle strength, but some drugs already allow its effects to be minimized, such as Zolgensma, which last year became the most expensive drug in the world – dethrone Luxturna, which combats blindness caused by another rare disease and costs almost $ 1 million.
In total, the couple raised 1.6 billion Chilean pesos (US $ 2.18 million) through “crowdfunding” to buy the drug.
“We want this to be a right for all babies born with this terrible disease. For this reason, we will continue knocking on doors so that Chile guarantees accessible availability (of the medicine) to all its children, ”Rafita’s parents promised. .
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