Little Rafael Calderón Benavente just completed his first month of life, and his parents celebrated it as if it were a birthday.
And it is that a few days after his birth, the baby from Talcahuano was diagnosed with type 1 spinal muscular atrophy (SMA), a strange degenerative disease that with every second that passes affects those who suffer from it, and that can become lethal ( see box).
“My sister is a pediatrician, and she traveled from Santiago to meet her nephew. It was thanks to his expert eye that we realized that something strange was happening. He found it hypotonic, without strength. There we moved to do all the necessary tests, and a few days later the terrible call came to us confirming the disease, ”Rafita’s father, Felipe Calderón, told La Cuarta.
After the young couple melted into a hug, and chewing the pain of the sad news, they immediately took action. As they already knew the example of little Borjita’s struggle, who also suffers from SMA, they knew that as quickly as possible they should go for a drug called Zolgensma, which with a value of 1,600 million pesos, is considered the most expensive in the world.
“We knew about Borjita’s case and that is why we knew a difficult fight was coming. It was thanks to him that we knew what decisions to make, but mainly, to know that there is a cure, which of course is the most expensive medicine in the world, but it is the path we have to travel, “added Calderón.
With that objective in mind, and thanks to the support of family and friends, they began with the campaign “Let’s save Rafita”, through the Instagram @salvemosarafita and the website salvemosarafita.cl, where all the information on the activities that They seek to gather the lucas necessary to buy the medicine.
It was through these means that the Chilean professional golfer, Joaquín Niemann, came up with the campaign, and without thinking twice he put his hand in his pocket to help the little one with his own “birdies for Rafita” campaign, in which he committed to donate $ 5,000 for each birdie he makes on the circuit.
“It was wonderful news for us. Not only is he helping us financially, but also giving us visibility on his social networks, which is what we need most at this time, that Rafita’s case is known so that more people can help us, ”said the mother, Madeleine Benavente.
To help in the “Save Rafita” campaign, voluntary contributions can be made to Banco de Chile’s current account 00-225-21509-08, with rout 15.178.151-9 in the name of Madeleine Benavente.
“So far we have received more than 9,000 contributions, with which we have managed to collect close to 200 million pesos. We are very grateful for the help, but we must continue to make an effort because we still have a lot to gather ”, closed the father.
What is the baby’s disease about?
Spinal muscular atrophy (SMA) is a very rare genetic degenerative disease in the world. As Rafita’s father explained, type 1 of this condition is attributed to patients who are diagnosed at an early age, before 6 months. It is characterized by the absence in the body of the gene that produces a protein that covers motor neurons, which in the long run results in muscle atrophy and problems in the functioning of vital organs such as the lungs.
“With each day that passes Rafita these neurons die, and what the medicine does is help generate the protein that covers them, to prevent this from happening. But that is not going to make me recover those who have already died, that is why the urgency of getting the medicine, to make the damage as less serious as possible, ”Calderón said.