{"id":85184,"date":"2024-05-02T12:14:55","date_gmt":"2024-05-02T17:14:55","guid":{"rendered":"https:\/\/thecitizenfortheworld.com\/?p=85184"},"modified":"2024-05-02T12:14:55","modified_gmt":"2024-05-02T17:14:55","slug":"caminara-mas-de-1-000-kms-por-chile-recolectando-dinero-para-comprar-un-remedio-que-cuesta-usd-3-6-millones-para-su-hijo","status":"publish","type":"post","link":"https:\/\/thecitizenfortheworld.com\/?p=85184","title":{"rendered":"Caminar\u00e1 m\u00e1s de 1.000 kms por Chile recolectando dinero para comprar un remedio que cuesta USD 3.6 millones para su hijo"},"content":{"rendered":"

Camila G\u00f3mez marchar\u00e1 desde Ancud a Santiago para concientizar sobre la Distrofia Muscular de Duchenne (DMD), e instar a los chilenos a ayudarla a comprar el medicamento que el peque\u00f1o Tom\u00e1s debe recibir antes de cinco meses<\/p>\n

(Desde Santiago, Chile)<\/i>\u00a0Son aproximadamente\u00a01.300 kms<\/b>\u00a0y el plan es hacerlos en\u00a0un mes<\/b>: el pasado domingo,\u00a0Camila G\u00f3mez,<\/b>\u00a0madre de\u00a0Tom\u00e1s<\/b>, inici\u00f3 una extensa traves\u00eda desde\u00a0Ancud a Santiago<\/b>\u00a0para concientizar sobre la\u00a0Distrofia Muscular de Duchenne (DMD)<\/b>, enfermedad que padece su hijo, y lograr sensibilizar a los chilenos de alcanzar la meta para adquirir un medicamento que alcanza la friolera suma de\u00a03.500 millones de pesos (USD 3,6 millones),<\/b>\u00a0sin duda el remedio\u00a0m\u00e1s caro del mundo.<\/b><\/p>\n

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Se trata de una enfermedad\u00a0gen\u00e9tica\u00a0<\/b>que afecta a 1 ni\u00f1o de cada 3.300 habitantes, seg\u00fan las estad\u00edsticas de la Organizaci\u00f3n Mundial de la Salud (OMS). La patolog\u00eda se caracteriza por una\u00a0debilidad muscular<\/b>\u00a0que progresa r\u00e1pidamente, afecta principalmente a los\u00a0hombres\u00a0<\/b>y aparece a una temprana edad.<\/p>\n

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La DMD es una de las distrofinopat\u00edas m\u00e1s graves. Afecta a\u00a0todos los m\u00fasculos del cuerpo<\/b>: las piernas, los brazos, el coraz\u00f3n y los m\u00fasculos respiratorios. Su tratamiento es indispensable desde\u00a0temprana edad<\/b>\u00a0para permitir alargar la vida de los pacientes, lo que implica un gasto exorbitante para las familias.<\/p>\n

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Sin embargo, la enfermedad no ha sido incorporada a la\u00a0Ley Ricarte Soto,<\/b>\u00a0que garantiza el diagn\u00f3stico y tratamiento de 27 enfermedades de alto costo para todos los chilenos, sin importar su situaci\u00f3n econ\u00f3mica.<\/p>\n

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Tom\u00e1s, de\u00a0cinco a\u00f1os,<\/b>\u00a0es uno de esos ni\u00f1os, pero hoy tiene una nueva esperanza. En Estados Unidos, la Administraci\u00f3n de Alimentos y Medicamentos aprob\u00f3 la primera terapia g\u00e9nica que promete detener la enfermedad a trav\u00e9s del medicamento\u00a0Elevidys<\/b>, que alcanza los 3.500 millones de pesos y que se suministra\u00a0una sola vez en la vida<\/b>\u00a0entre los 4 y 5 a\u00f1os.<\/p>\n

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El hijo de Camila cumple los seis en octubre de este a\u00f1o, por lo que\u00a0el tiempo apremia.<\/b><\/p>\n

La madre de Tom\u00e1s resalt\u00f3 que\u00a0\u201cse nos est\u00e1 acabando el tiempo<\/b>, pero no descansaremos hasta lograrlo (…) Hoy caminamos por todos los ni\u00f1os y familias que padecen esta compleja enfermedad\u201d, se\u00f1al\u00f3, seg\u00fan reza una nota de Cooperativa.<\/p>\n

As\u00ed, Camila se encuentra por estos fr\u00edos y lluviosos d\u00edas marchando desde Ancud hasta el Palacio de La Moneda, donde entregar\u00e1 una carta al Presidente\u00a0Gabriel Boric<\/b>\u00a0para exponerle la situaci\u00f3n de los ni\u00f1os con Duchenne.<\/p>\n

Durante sus cerca de 1.300 kil\u00f3metros de camino, Camila est\u00e1 acompa\u00f1ada de Marcos Reyes y su marido, quienes le siguen a bordo de una camioneta y \u201ccada ciertos kil\u00f3metros se acerca para darnos\u00a0agua y comida\u201d.<\/b><\/p>\n

\u201cLa idea es llegar en un mes al Palacio de La Moneda y ojal\u00e1 en el \u00faltimo trayecto nos acompa\u00f1e la mayor cantidad de gente posible, sobre todo que nos sigan aquellas\u00a0familias<\/b>\u00a0que tienen un\u00a0hijo con esta enfermedad\u00a0<\/b>que ahora tiene posibilidades de tratamiento. Antes mandaban a estos ni\u00f1os a la casa a morir, pero ahora existe una esperanza\u201d, se\u00f1al\u00f3.<\/p>\n

Hasta el momento, explic\u00f3 Camila, han reunido\u00a0$341 millones de pesos (USD 356 mil)\u00a0<\/b>en rifas y donaciones, sin embargo, no alcanza ni para el 10% del costo del medicamento. Su objetivo es concientizar a todos con quienes se encuentren en su camino para llegar a la meta, pero tambi\u00e9n para dar cuenta al Gobierno de la importancia de que esta enfermedad sea cubierta por la Ley Ricarte Soto.<\/p>\n

Para ello, junto a su marido crearon la campa\u00f1a denominada\u00a0\u201cYo soy parte del Mill\u00f3n\u201d<\/b>, que consiste b\u00e1sicamente en que un mill\u00f3n de personas donen $3 mil 500 pesos (USD 4 d\u00f3lares). Es posible realizar las donaciones en las siguientes cuentas:<\/p>\n

Cuenta Corriente Banco de Chile: 0032 80 566 707.<\/b><\/p>\n

Cuenta RUT de Banco Estado: 18.116.965-6, con el correo: Camila.gomezval@gmail.com.<\/b><\/p>\n

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(Con informaci\u00f3n de Infobae)<\/em><\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n
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<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

Camila G\u00f3mez marchar\u00e1 desde Ancud a Santiago para concientizar sobre la Distrofia Muscular de Duchenne (DMD), e instar a los chilenos a ayudarla a comprar el medicamento que el peque\u00f1o Tom\u00e1s debe recibir antes de cinco meses (Desde Santiago, Chile)\u00a0Son aproximadamente\u00a01.300 kms\u00a0y el plan es hacerlos en\u00a0un mes: el pasado domingo,\u00a0Camila G\u00f3mez,\u00a0madre de\u00a0Tom\u00e1s, inici\u00f3 una […]<\/p>\n","protected":false},"author":1,"featured_media":85185,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_mi_skip_tracking":false},"categories":[3],"tags":[],"yoast_head":"\nCaminar\u00e1 m\u00e1s de 1.000 kms por Chile recolectando dinero para comprar un remedio que cuesta USD 3.6 millones para su hijo - The citizen for the world<\/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:\/\/thecitizenfortheworld.com\/?p=85184\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Caminar\u00e1 m\u00e1s de 1.000 kms por Chile recolectando dinero para comprar un remedio que cuesta USD 3.6 millones para su hijo - 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