{"id":9523,"date":"2023-11-13T04:49:54","date_gmt":"2023-11-13T04:49:54","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2023\/11\/13\/marian-vaya-madre-tres-hijos-con-ataxia-friedreich-supe-que-nuestra-vida-cambiaria-para-siempre-pero-tambien-que-luchariamos-hasta-final\/"},"modified":"2023-11-13T04:49:54","modified_gmt":"2023-11-13T04:49:54","slug":"marian-vaya-madre-tres-hijos-con-ataxia-friedreich-supe-que-nuestra-vida-cambiaria-para-siempre-pero-tambien-que-luchariamos-hasta-final","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2023\/11\/13\/marian-vaya-madre-tres-hijos-con-ataxia-friedreich-supe-que-nuestra-vida-cambiaria-para-siempre-pero-tambien-que-luchariamos-hasta-final\/","title":{"rendered":"Marian Vaya, madre de tres hijos con ataxia: \u00abSupe que nuestra vida cambiar\u00eda, pero tambi\u00e9n que luchar\u00edamos hasta el final\u00bb"},"content":{"rendered":"

Leemos en Discapacidad la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n

\n

Hace cuatro a\u00f1os, la vida de Marian Vaya<\/b> y el de toda su familia dio un vuelco que nadie esperaba. Sus tres hijos (Daniel, Carolina y Hugo) eran diagnosticados de ataxia de Friedreich<\/b>, una rara y devastadora enfermedad degenerativa<\/b> que, a d\u00eda de hoy, no tiene cura.<\/p>\n

Tras un periodo de duelo, empez\u00f3 una nueva vida llena de lucha, desaf\u00edos, esperanzas y un objetivo claro: visibilizar y concienciar sobre una enfermedad que afecta, seg\u00fan datos estimados, afecta a 4,6 de cada 100.000 personas.<\/p>\n

Y as\u00ed lo hace a trav\u00e9s de viviendo_con_ataxia<\/a> una cuenta de Instagram en la que, adem\u00e1s de visibilizar le ha permitido ser una de las elegidas en Ellas Cuentan<\/b>, una acci\u00f3n solidaria, lanzada por el Club de Malasmadres<\/a> y Cinfa que reconoce a mujeres que se enfrentan a diferentes situaciones vitales. Gracias a este proyecto, los hijos de Marian podr\u00e1n acceder a sesiones de fisioterapia Therasuit y otras terapias para paliar los s\u00edntomas de esta dura enfermedad.<\/p>\n

La primera vez, con Daniel, no pod\u00eda creer lo que nos estaba pasando. Asimilarlo fue muy dif\u00edcil, pero saqu\u00e9 fuerzas y me fui preparando para un posible segundo golpe.<\/h1>\n

Dejamos de hacer planes a largo plazo, a y vivimos el hoy. Es la manera en la que hemos elegido encarar nuestra vida en busca de la felicidad<\/h1>\n

El d\u00eda transcurre en terapias, fisio, nataci\u00f3n\u2026 El mundo de los cumplea\u00f1os y el parque est\u00e1 un poco apartado de nuestro calendario<\/h1>\n<\/div>\n

Fuente: Discapacidad https:\/\/www.20minutos.es\/noticia\/5189098\/0\/marian-vaya-madre-tres-hijos-con-ataxia-friedreich-supe-que-nuestra-vida-cambiaria-para-siempre-pero-tambien-que-luchariamos-hasta-final\/<\/p>\n","protected":false},"excerpt":{"rendered":"

Marian Vaya lucha cada d\u00eda por encontrar tratamientos y una cura para la ataxia de Friedreich, una enfermedad degenerativa que afecta a la movilidad y a la salud en general.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_members_access_role":[],"_members_access_error":""},"categories":[8],"tags":[],"class_list":["post-9523","post","type-post","status-publish","format-standard","hentry","category-noticias"],"yoast_head":"\nMarian Vaya, madre de tres hijos con ataxia: "Supe que nuestra vida cambiar\u00eda, pero tambi\u00e9n que luchar\u00edamos hasta el final" - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/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:\/\/sindromecharge.es\/index.php\/2023\/11\/13\/marian-vaya-madre-tres-hijos-con-ataxia-friedreich-supe-que-nuestra-vida-cambiaria-para-siempre-pero-tambien-que-luchariamos-hasta-final\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Marian Vaya, madre de tres hijos con ataxia: "Supe que nuestra vida cambiar\u00eda, pero tambi\u00e9n que luchar\u00edamos hasta el final" - 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