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29 de abril de 2024
atrofia muscular
Movida frente a Gobernación para que Aquiles reciba su tratamiento viernes 2 de diciembre de 2016 11:21
Familiares de Aquiles Donato, el bebé que padece una Atrofia Muscular Espinal (AME) grado 1 y necesita someterse a un tratamiento con una droga que todavía no fue aprobada, se manifestarán este viernes por la mañana frente a la sede Rosario de Gobernación. La movida, que incluirá un corte de calle en la intersección de Santa Fe y Moreno a partir de las 10, apunta al gobernador Miguel Lifschitz: pretenden que el mandatario los reciba y se comprometa a acelerar los pasos para que el niño comience el proceso que, según la expectativa de sus padres, puede salvar su vida.
Para Sebastián y Ana, los papás de Aquiles, las últimas semanas fueron muy agitadas. Tras descubrir la enfermedad de su bebé, una patología degenerativa que se le detectó a los 4 meses de vida, se aferraron a una esperanza: un tratamiento con vacunas que podría revertir la enfermedad.
Sin embargo, nada fue sencillo. Sucede que el laboratorio Biogen de Estados Unidos, productor de las vacunas, todavía está tratando de conseguir la aprobación de la FDA (Agencia de Alimentos y Medicamentos o Agencia de Drogas y Alimentos) para suministrar la droga.
Pero los familiares de Aquiles movieron cielo y tierra y obtuvieron el compromiso de los gobiernos nacional y provincial para conseguir el programa de uso compasivo para el medicamento que puede salvar la vida del bebé que tiene siete meses y desde hace dos está internado en el Hospital Español de Rosario.
Dos semanas transcurrieron desde aquella buena noticia y las novedades se frenaron. El programa de uso compasivo aun no se efectivizó y la droga para Aquiles sigue sin aparecer. Por eso, sus familiares decidieron llevar el reclamo a la calle con el objetivo de que "se pueda resolver de una vez". En la protesta frente a Gobernación pedirán una audiencia con Lifschitz para que el gobernador se comprometa a acelerar el inicio del tratamiento, ese al que se aferran para que Aquiles pueda salir adelante.