{"id":86931,"date":"2021-09-26T18:17:43","date_gmt":"2021-09-26T21:17:43","guid":{"rendered":"http:\/\/infoecos.com.ar\/?p=86931"},"modified":"2021-09-30T15:50:29","modified_gmt":"2021-09-30T18:50:29","slug":"campana-solidaria-para-un-bebe-de-lincoln-necesita-el-medicamento-mas-caro-del-mundo","status":"publish","type":"post","link":"https:\/\/infoecos.com.ar\/index.php\/campana-solidaria-para-un-bebe-de-lincoln-necesita-el-medicamento-mas-caro-del-mundo\/","title":{"rendered":"Campa\u00f1a solidaria para un beb\u00e9 de Lincoln: necesita el medicamento m\u00e1s caro del mundo"},"content":{"rendered":"\n<p>En los \u00faltimos d\u00edas, comenz\u00f3 a circular en redes sociales una campa\u00f1a por un beb\u00e9 de seis meses que tiene familiares en Lincoln y padece una enfermedad denominada \u201cAME tipo 1\u201d (Atrofia Muscular Espinal). El peque\u00f1o necesita una medicaci\u00f3n que cuesta U$S 2 millones pero que le dar\u00eda la posibilidad de mejorar su calidad de vida. Su obra social aprob\u00f3 la cobertura del tratamiento pero necesita otro remedio que es conocido como \u201cla medicaci\u00f3n m\u00e1s cara del mundo\u201d.<\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-medium\"><img loading=\"lazy\" decoding=\"async\" width=\"460\" height=\"261\" src=\"http:\/\/infoecos.com.ar\/wp-content\/uploads\/2021\/09\/lospadresdebauti-460x261.jpg\" alt=\"\" class=\"wp-image-86932\" srcset=\"https:\/\/infoecos.com.ar\/wp-content\/uploads\/2021\/09\/lospadresdebauti-460x261.jpg 460w, https:\/\/infoecos.com.ar\/wp-content\/uploads\/2021\/09\/lospadresdebauti.jpg 696w\" sizes=\"(max-width: 460px) 100vw, 460px\" \/><\/figure><\/div>\n\n\n\n<p>El pap\u00e1 de Bauti, Augusto Aguirre, cont\u00f3 al diario <strong>Democracia de Jun\u00edn<\/strong> que a su hijo \u00able falta un gen, el SMN 1 que es el encargado de producir el 90% de una prote\u00edna muscular y es una enfermedad que avanza muy r\u00e1pido\u00bb. El pasado 14 de septiembre, desde la obra social le comunicaron que la medicaci\u00f3n Sprinraza hab\u00eda sido solicitada para Bauti y que en un periodo de diez d\u00edas podr\u00eda llegar. \u201cFueron aprobadas las primeras 4 dosis de ataque, cada 4 meses se deber\u00e1 hacer una nueva prescripci\u00f3n, solicitud y aprobaci\u00f3n del medicamento por parte de la obra social\u201d, dijo Augusto.<\/p>\n\n\n\n<p>Por otro lado, el pap\u00e1 explic\u00f3 que \u201cZolgensma es una droga que introduce el gen que le falta a Bauti con una sola inyecci\u00f3n por v\u00eda venosa en toda su vida; el problema es que tiene un valor de dos millones de d\u00f3lares, y se debe aplicar antes de los dos a\u00f1os de vida y de los 13 kilos de peso. Bauti ya pesa 9,5 kilos, el tiempo se acorta\u00bb detall\u00f3.<\/p>\n\n\n\n<p>\u201cNuestro objetivo es juntar los fondos necesarios para poder adquirir Zolgensma, y aproximar a Bauti a la cura de su enfermedad para brindarle una vida normal, si es que el t\u00e9rmino \u2018normal\u2019 existe\u201d, y sigui\u00f3: \u201cTenemos la convicci\u00f3n de llegar a juntar los dos millones de d\u00f3lares antes de que Bauti cumpla los 2 a\u00f1os y antes de que llegue a los 13.5 kilos; el reloj biol\u00f3gico nos corre, hoy Bauti pesa 9.5 Kg; la gente nos ha demostrado un apoyo inmenso y estamos convencidos que con su ayuda lo vamos a lograr\u201d. En la misma l\u00ednea aclar\u00f3 que, \u00ablos fondos de recaudaci\u00f3n, de no poder ser utilizados para Bauti por motivos de tiempo, ser\u00e1n destinados a ayudar a otras familias en esta situaci\u00f3n\u00bb.<\/p>\n\n\n\n<p><strong>QUE ES LA ATROFIA MUSCULAR ESPINA<\/strong>: La atrofia muscular espinal (AME) es una enfermedad gen\u00e9tica que ataca las c\u00e9lulas nerviosas que se encuentran en la m\u00e9dula espinal. Estas neuronas se comunican con los m\u00fasculos voluntarios, es decir, aquellos que podemos controlar, como lo de los brazos y las piernas. Si bien es una enfermedad que no tiene cura, existen medicamentos que ayudan a contrarrestar sus efectos y, de estos, el m\u00e1s revolucionario es Zolgensma.<\/p>\n\n\n\n<p>El \u00fanico problema es que es la medicaci\u00f3n m\u00e1s cara del mundo, cuesta US$ 2 millones y en beb\u00e9s no puede ser aplicada a cualquier edad y peso. Los medicamentos dedicados a estos pacientes se centran en aumentar el nivel de las prote\u00ednas que permiten el movimiento de las articulaciones. Zolgensma del laboratorio Novartis, en cambio, es un tratamiento gen\u00e9tico que busca reparar los genes para que sean capaces de producir esas prote\u00ednas en cantidades normales.<\/p>\n\n\n\n<p><strong>DATOS PARA COLABORAR CON BAUTI<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\"><li>CBU: 0140999803200060283909 (a nombre de Gabriela Trofimovich, mam\u00e1 de Bauti)<\/li><li>Mercadopago: todos.con.bauti (para transferencias)<\/li><li>CBU: 0140999804200057387251 (para transferir en d\u00f3lares)<\/li><\/ul>\n\n\n\n<p><strong>Fuente: diario Democracia de Jun\u00edn y Diario Actualidad de General Villegas<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Se tienen que juntar dos millones de d\u00f3lares y la medicaci\u00f3n se debe aplicar antes de los dos a\u00f1os de vida y de los 13 kilos de peso<\/p>\n","protected":false},"author":2,"featured_media":86933,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1330],"tags":[5273],"class_list":["post-86931","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-inferior10","tag-padece-atrofia-muscular-espinal"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.4 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Campa\u00f1a solidaria para un beb\u00e9 de Lincoln: necesita el medicamento m\u00e1s caro del mundo - Infoecos<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/infoecos.com.ar\/index.php\/campana-solidaria-para-un-bebe-de-lincoln-necesita-el-medicamento-mas-caro-del-mundo\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta 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