Dayron Almonte suffers from Spinal Muscular Atrophy, a genetic disease that causes weakness and severe muscle wasting in babies.External source
Santo Domingo — After a year of waiting, the Ministry of Public Health and the High Cost Drugs Program have yet to approve the life-saving medicine for baby Dayron.
“Without the medicine, Dayron Almonte will not be able to continue alive!” is the concern that the parents of the minor, Inmanol Almonte and Genesis Socias, immerse themselves in every time they face the reality of a bottle of Evrysdi that is about to end.
As a way to raise their voices, Dayron’s parents will hold a peaceful protest for the approval of the medication that the baby needs to continue living.
The appointment is on Wednesday, March 25, at 10:00 a.m., right in front of the National Palace.
The call was extended to the entire community that wishes to support Dayron, in addition to an urgent call to the authorities responsible for guaranteeing the right to health of human beings and access to essential medicines, rights that are established in the Constitution of the Dominican Republic and the General Health Law No. 42-01.
Article 61.- Right to health. Everyone has the right to comprehensive health.
“The State must ensure the protection of the health of all people, access to drinking water, the improvement of food, sanitary services, hygienic conditions, environmental sanitation, as well as provide the means for the prevention and treatment of all diseases, ensuring access to quality medicines and providing free medical and hospital assistance to those who require it,” established by the Constitution of the Dominican Republic.
Dayron Almonte Socias, only one year old, has been a warrior since birth. The struggle to keep your heart beating and win the battle against Spinal Muscular Atrophy, a genetic disease that causes severe muscle weakness and wasting in babies, is not over yet.
The boy was diagnosed with this disease in December 2024, when he was just one month old. Since then, his parents have been doing everything in their power to get the medicine he needs.
Evrysdi is the name of the drug that was indicated to Dayron, but the current cost of a 0.75 mg/ml bottle is 620,000 pesos every two months, which is impossible for parents to afford.
The protest is not only for Dayron, but it is also for all those people who are still waiting for the approval of a drug that will allow them to stay alive.