The trajectory of Madeleine Benavente and Felipe Calderón to consume the most important drug of the world has begun more than three months ago, when his wife Rafael was diagnosed, with smallpox, having spinal muscular atrophy (AME). progressively pierces the physical force necessary for gait, breathing, feeling, walking, breathing and breathing.
Although it has no cure for this, the drug Zolgensma, which is valued at millions of dollars, is currently the only option for children like Rafael to be able to correct their genetic defect.
This family, which resides in the town of Talcahuano (sur), has been in contact with another family that he also has a need for this cost treatment in Chile and so we should not start the “Salvemos a Rafita” campaign, thank you to donations and crowdfunding super the objective and move to all one country.
“When we learn about the disease my husband posted on Facebook our history and the need for medicine. I’re empressing the most searching and questioning of our current account and lying empresses other people to donate spontaneously ”, relates Rafael’s mother, Madeleine Benavente.
Benefactor declares surprise at the level of solidarity that moves donors inside and around the country, and that was strongly encouraged, in the medium term, by Chilean golfer Joaquín Niemann, first of all, who included a premium of 137 miles for read about the meta and push the case on the radar of public opinion.
“It was very difficult for us to have a very healthy child, a very good embarrassment in which all the salaries were good, to have a catastrophe that meant that our Rafael had to die in one month, but Rafael had to die because Chilean descents and fires in Chile, as well as donations and telephone calls from distant countries of Latin America and Europe ”.
Solidarity in full pandemic
The little Rafael was born on October 21, 2020 and was hospitalized for one month, in addition to being interned in the Intensive Care Unit, a drama that brought the Calderón Benavente family into full crisis with COVID-19, which resulted in that, in the midst of the sanitary emergence, the case of his hogworm moves to aunt.
“I have a lot of support, but it’s super good that we’ve agreed and are happy with everything we help. Although it has been so good that it has been difficult to collect millions of dollars in Chile in a year that has been very long for all the world, including, appealing only to the solidarity of the people, ”said Felipe Calderón, father of the baby.
Without embarrassment, this family makes sure that it can not be romanticized that the treatment of this child, which is considered rare to affect up to 4 out of every 100,000 babies, depends on the donations and the care of the people and can not stay with the attention of chileno health system.
“We are determined to make it easier for the nurse to be involved in the public system so that no one who has contact with AME can receive treatment. It is extremely tragic because of the illness in the private health care system in which we cover palliative care, the UCI and the home hospitalization, but not the medicine that is necessary. “While the public system does not cover the treatment or protection,” Benavente said.
A wonderful treat
For Madeleine and Felipe he had many months of anguish and a little bit of pain, with the onset of the drug Zolgensma, which, as far as cost is concerned, has the decaying effect and has shown that Rafita has tried to produce the protein of his body. spinal muscular atrophy, a syndrome that affects between 5 and 10 babies annually in Chile.
This treatment, which is in the market two years ago, has been administered to 700 children at world level and its application must be made in the first 100 days to help correct the genetic defects and neutralize the loss of weight. “Geen hooi waarborg alguna, pero hooi buenas kanse de que el ruerel de Rafael empiece a producer la proteine que no produce y con eso se regeneren las cellulas neuromotoras; that’s what medicine is all about, ”Felipe Calderón said.
Rafael’s parents hope that the drug, which is a genetically modified virus, is released from a Chicago laboratory. Sondeverbod, know that only these are kinesiology and phonoudiology therapies for delante.
“We are conscious that we are not a magical medicine, we are not a cure-all and we will continue to support Rafael with many therapies for the development of any motorbike and if we have much certainty that we will stay”, concludes the father of the little one Rafael.
By: Andrea Aguilar Córdoba / Anadolu