Baby with spinal muscular atrophy who was waiting for access to medication dies

Dajabón.– The struggle of Eyden Alexander Rodríguez Peralta, a baby of just eight months diagnosed with spinal muscular atrophy (SMA) type I, ended early this Monday after passing away following several weeks admitted to the Arturo Grullón Regional University Children’s Hospital, in Santiago.

The minor remained under medical care due to complications derived from the genetic disease, considered one of the most aggressive, as it progressively affects muscle strength and compromises vital functions such as breathing and mobility.

His passing occurred around 12:00 midnight. Subsequently, his remains were transported to the Dajabón province, where family, friends, and members of the community bid him a final farewell before his burial.

Eyden’s story moved hundreds of people across the country after his family launched a campaign to help him access the medication Evrysdi, a treatment used to slow the progression of spinal muscular atrophy.

His mother, Jenifer Peralta, had recently expressed her hope after it was announced that the drug was incorporated into the Ministry of Public Health’s High-Cost Medication Program. However, the child passed away before he could receive the first dose of the treatment.

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The news has generated numerous expressions of solidarity on social media, where citizens lamented the outcome of the case and sent messages of support to the minor’s parents, who for months had called on the authorities and the public to obtain the treatment that could improve his quality of life.

Spinal muscular atrophy (SMA) is a rare genetic disease that affects the motor neurons responsible for muscle movement. In its type I form, considered the most severe, it usually manifests during the first months of life and requires specialized medical care to prolong survival and improve the patient’s conditions.

Eyden’s case reopens the debate on how quickly patients with rare diseases can access high-cost medications and the importance of ensuring that these treatments reach those who need them in a timely manner.