{"id":20639,"date":"2025-02-11T15:20:39","date_gmt":"2025-02-11T21:20:39","guid":{"rendered":"https:\/\/poderciudadanoradio.com\/?p=20639"},"modified":"2025-02-11T15:20:47","modified_gmt":"2025-02-11T21:20:47","slug":"bebe-de-ensenada-lleva-mas-de-500-dias-hospitalizado-y-necesita-el-medicamento-mas-caro-del-mundo-de-36-millones-de-pesos-para-sobrevivir","status":"publish","type":"post","link":"https:\/\/poderciudadanoradio.com\/bebe-de-ensenada-lleva-mas-de-500-dias-hospitalizado-y-necesita-el-medicamento-mas-caro-del-mundo-de-36-millones-de-pesos-para-sobrevivir\/","title":{"rendered":"Beb\u00e9 de Ensenada lleva m\u00e1s de 500 d\u00edas hospitalizado y necesita el medicamento m\u00e1s caro del mundo, De 36 millones de pesos, para sobrevivir"},"content":{"rendered":"\n<h3 class=\"wp-block-heading\"><\/h3>\n\n\n\n<p>En <strong>Ensenada, Baja California<\/strong>, la comunidad se une en una gran muestra de solidaridad para ayudar a <strong>Rafita<\/strong>, un beb\u00e9 de <strong>1 a\u00f1o y 8 meses<\/strong> que ha permanecido en el hospital desde su nacimiento debido a una <strong>atrofia muscular espinal tipo 1<\/strong>. Para mejorar su calidad de vida, necesita un tratamiento m\u00e9dico que cuesta <strong>36 millones de pesos<\/strong>, una cifra inalcanzable para su familia.<\/p>\n\n\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" width=\"768\" height=\"432\" src=\"https:\/\/poderciudadanoradio.com\/wp-content\/uploads\/2025\/02\/bebe-rafita-tratamiento-millonario-ensenada-apoyo.webp\" alt=\"\" class=\"wp-image-20640\" srcset=\"https:\/\/poderciudadanoradio.com\/wp-content\/uploads\/2025\/02\/bebe-rafita-tratamiento-millonario-ensenada-apoyo.webp 768w, https:\/\/poderciudadanoradio.com\/wp-content\/uploads\/2025\/02\/bebe-rafita-tratamiento-millonario-ensenada-apoyo-300x169.webp 300w\" sizes=\"(max-width: 768px) 100vw, 768px\" \/><\/figure>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Un tratamiento que podr\u00eda cambiar su vida<\/strong><\/h3>\n\n\n\n<p>Desde su primer mes de vida, <strong>Rafita fue diagnosticado con atrofia muscular espinal<\/strong>, una enfermedad que impide que su cuerpo produzca la <strong>prote\u00edna SML1<\/strong>, esencial para el movimiento de los m\u00fasculos. Como consecuencia, el beb\u00e9 ha estado hospitalizado por <strong>m\u00e1s de 500 d\u00edas<\/strong> bajo <strong>cuidado intensivo las 24 horas<\/strong> y conectado a un ventilador.<\/p>\n\n\n\n<p>A pesar del diagn\u00f3stico, <strong>existe esperanza<\/strong>. El peque\u00f1o podr\u00eda recibir el medicamento <strong>Zolgensma<\/strong>, conocido como <strong>\u00abel medicamento m\u00e1s caro del mundo\u00bb<\/strong>, que con una <strong>\u00fanica aplicaci\u00f3n<\/strong> podr\u00eda ayudarlo a producir la prote\u00edna que su cuerpo necesita, permiti\u00e9ndole recuperar funciones motoras y reducir su dependencia del ventilador.<\/p>\n\n\n\n<p><em>\u00abEl tratamiento es de una sola aplicaci\u00f3n y hace que produzca esa prote\u00edna que no tiene&#8230; Podr\u00eda retomar sus funciones motoras y tambi\u00e9n podr\u00eda dejar el ventilador, que es la principal raz\u00f3n de que est\u00e1 en el hospital\u00bb<\/em>, explic\u00f3 su padre, <strong>Rafael Medina<\/strong>.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Una comunidad unida para salvar a Rafita<\/strong><\/h3>\n\n\n\n<p>Desde enero, la familia de <strong>Rafita<\/strong> ha organizado diversas colectas para recaudar los fondos necesarios. Una de las iniciativas es el <strong>\u00abRafiboteo\u00bb<\/strong>, en la que ciudadanos y voluntarios han salido a las calles de <strong>Ensenada<\/strong> para pedir apoyo econ\u00f3mico y lograr que el beb\u00e9 reciba el tratamiento.<\/p>\n\n\n\n<p>A pesar de los esfuerzos, la meta a\u00fan est\u00e1 lejos de alcanzarse, por lo que sus padres hacen un llamado a la sociedad para seguir apoyando la causa.<\/p>\n\n\n\n<p><em>\u00abA todos los invitamos a que se unan a la lucha de mi beb\u00e9, a la lucha de Rafita para que \u00e9l pueda tener una esperanza de vida, una mejor calidad de vida y pueda salir de este hospital que tanto nos ata&#8230; que pueda recibir los rayos del sol, sentir la brisa del mar, sentir el viento en su carita, conocer a su familia, y todas esas cosas tan peque\u00f1as que \u00e9l no ha disfrutado a su corta edad\u00bb<\/em>, expres\u00f3 su padre.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>\u00bfC\u00f3mo ayudar a Rafita?<\/strong><\/h3>\n\n\n\n<p>La familia de Rafita sigue impulsando campa\u00f1as de recaudaci\u00f3n y buscando apoyo de asociaciones y donadores. Cualquier ayuda, por m\u00ednima que sea, <strong>puede hacer la diferencia para que Rafita tenga la oportunidad de vivir una vida fuera del hospital<\/strong>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>En Ensenada, Baja California, la comunidad se une en una gran muestra de solidaridad para ayudar a Rafita, un beb\u00e9 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