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Yesterday millions of people were happy with the news that the family of Borja Diaz, little one year old who suffers from spinal muscular atrophy type 1 and he needed to afford the most expensive drug in the world. After several months, it was reported that her parents had won the World Lottery and the boy would get a cure.
In conversation with Radio Bío Bío María José Caro and Rodrigo Díaz, Borja’s parents, maintained that they are still excited by the news, although they assume that there is still a long way to go.
“We knew about the existence of this World Lottery and we tried to participate in several times. We knew there were options, but the possibility was low. It took us months to try to apply, because it was super difficult. The child had to meet certain characteristics, a doctor and a clinic had to nominate him, so we had to convince the director of a campus, after five months ”, Caro explained.
“At one point we were hoping that they would call us, but after a while we realized that we could not leave our son’s fate to chance. and that nobody calls us. After that we started the campaign. In the end all the prayers and faith translated into that ”, added Díaz.
In this sense, it must be remembered that the drug is called Zolgensma and had an approximate cost of 1,600 million Chilean pesos.
In order to have a chance to access it, both had had meetings even with the Minister of Health, to allow these remedies to enter tax-free in the future.
“Although Borja closed a collection stage, Answers from the authority are needed because there are still other children, like Lucas in Iquique. He is going to need this answer, but his campaign in another year is going to be more than 2,000 million pesos, and there is more, “said the boy’s father.
“We do not want to leave contact with the authorities, because this has to have a root change. We are going to try everything ”, the mother said.
At the moment the couple is calmer, although they also maintained that Borja has gone through some health complications, so they will have to undergo a series of treatments before starting the process with Zolgensma.
“Borja is still in trouble with his health. He lost weight for various reasons and now we are trying to better nourish him to get him back to a good weight. His swallowing is not good, so we have to put a gastrostomy on him, we have to coordinate it, ”said María José.
“In parallel, the doctor is seeing the steps to get the medicine to arrive as soon as possible. We know that in the cases of other children these took a month. This one is custom made so they have to send exact doses. You just have to do it and take care of Borjita ”, added.
Finally, the boy’s mother told part of what is coming for him, hoping that everything will turn out for the best.
“Then we hope that this genetic error will be fixed and we will pray that this neural connection improves. After a long rehabilitation process will come so that your muscles begin to gain strength, you can move your legs more. We will also have to see therapy options ”, he concluded.
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