A protest was registered this Wednesday outside the Palacio de La Moneda and was led by Vanessa Ramírez, the mother of Emiliano Cereceda, a child who needs the most expensive medicine in the world.
Little Emiliano’s mother chained herself to one of the fences that surround the perimeter of Government House.
Let us remember that Emiliano, aged one year and two months, suffers from spinal muscular atrophy (SMA), a degenerative disease that has no cure and is fatal if the patient does not receive treatment within two years. For this, he needs the drug Zolgensma, which costs about two million dollars.
In a conversation with ADN radio, Ramírez said that “it is a high-cost medicine. I think that the State’s pocket is being taken care of too much and the health of children and our children is not being thought of. I don’t want my son to die and be a martyr so that only then can something be done for the children.”
Along these lines, he stated that “our children are being part of a laboratory business and I don’t know if the Ministry of Health or the State do not want to see it or are not considering it because they told me that Emiliano was no longer a candidate because he was already over six months old and had a tracheostomy. Lucas is four months old, he hasn’t had a tracheotomy and they don’t want to prescribe the medication either. No neurologist in Chile is prescribing”.