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During the afternoon of this Wednesday, the parents of Borja – a child suffering from Spinal Muscular Atrophy (SMA) type 1 who needed a drug of US $ 2.1 million – announced that, after applying for a world lottery, they will receive a donation of the expensive drug Zolgensma .
His mother, Mariajosé, said that on Canal 13’s Here We Are All that “the only option to get it for free this year was to apply for a world lottery, which raffled off a couple of doses. 25 doses? Imagine among everyone, and there was no information on how many children were applying. It was not known by anyone.
Rodrigo, Borja’s father, pointed out that it is also not possible to arrive and apply: “A clinic has to apply for you, so to speak, because it has to have certain protocols, so with that it helped us to effectively have the protocols and to be able to carry out a campaign to to be able to have the medicine ”.
“We insisted in this clinic that it could be and we even spoke with the medical director (…) and finally the clinic agreed. It took us five months to apply. We applied for a month, there was no news, ”said Maríajosé.
For his part, Rodrigo added that they were in the “multidisciplinary consultation and the last doctor who is the neurologist actually stayed and she tells us she has news”. “In effect he tells us’ Rodrigo, you know they called me from the laboratory and I have to talk to you,” he said.
“There they tell us that Borjita stayed, he stayed in the world lottery. (…) We can’t believe it (…) it was such a low possibility and they tell us that he earned it, imagine all the effort we had made (…). This happened because of all the energy of the people, which I think many, many people asked for Borja ”, added Maríajosé.
What comes now
According to his parents, Borja will now have to take an exam. From there, the arrival of the drug to the country will be coordinated.
His father also mentioned that, of the donations of all the people, they will only keep a percentage that will be used for Borja’s recovery. The rest of the money will be donated to other children with Spinal Muscular Atrophy.
“I think this was a miracle, a miracle of the people, (…) they gave us the dose. (…) I am infinitely grateful to all, to all those who did their bit, that fills me with love ”, expressed Maríajose.
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