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Rafita, who was born on October 21 in the city of Concepción, in Chile, was diagnosed with a complex illness two weeks after he was born, publishes 24 Hours.
According to that medium, the small suffre of Spinal Muscular Atrophy (SMA), a degenerative disease manifested by the progressive loss of muscle strength, since it does not generate the protein that motor neurons need.
The baby was diagnosed early with this disease thanks to her aunt, Carolina Calderón, who is a pediatrician and saw Rafita’s symptoms hypotonic, so he immediately asked for tests to rule out many diseases, indicates that newsletter.
“We did the genetic-molecular examination to rule out the disease, but a week later, when Rafita was 15 days old, they confirmed that he had SMA and in its most serious and aggressive forms,” his parents, Felipe, told the Bio Bio newspaper. Calderón Pascual and Madeleine Benavente Rojas.
Unfortunately, the results showed that the child suffers from SMA type 1, the most severe level of that disease leaving the muscles very weak, therefore those who suffer from it cannot breathe alone. The baby’s parents moved to Santiago de Chile so that their son receives the best treatment.
What is the most expensive drug in the world that Rafita needs to survive?
However, it details 24 Hours, to pay for the medicine Zolgensma that Rafita needs to be cured, they need to raise 1,600 million Chilean pesos, that is, a whopping 7,500 million Colombian pesos.
Although the Zolgensma, in theory, can only be received at 2 years of age, the Calderón Benavente family He begs to collect the money in less than 100 days so that the deterioration of his motor neurons is not greater and the damage can be repaired, so they created an Instagram account to ask for donations.
“We are ordinary people. In a year like this we have the privilege of having a job, but it just isn’t enough. So we had to go out and appeal to the solidarity of the people, since we don’t even have a large network of contacts”Added Felipe Calderón to Bio Bio.
The Chilean family is very grateful to all those who have donated to them and so far, as confirmed, they have already managed to collect 40% of the goal.
“We never thought we would have so much support, but the reality is that we still have to reach the goal … Every day that passes, we see Rafa die a little, unless we arrive with the medicine. The truth is that this is something urgent for us. We need them as soon as possible, ”their parents added.
Finally, Calderón pointed out that does not understand why these types of diseases are not covered by the State, so he said he wanted to have a meeting with Minister Enrique Paris or speak to someone from the Ministry of Health to explain why this is not covered.
How to help Rafita, the baby who needs the most expensive medicine in the world?
The baby’s family created a website to receive contributions from all over the world and thus complete the money necessary to buy the Zolgensma. Payment methods such as Paypal or through the GoFundMe platform are enabled. To donate click here.
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