{"id":4175,"date":"2019-01-20T15:52:13","date_gmt":"2019-01-20T15:52:13","guid":{"rendered":"https:\/\/sindromecharge.es\/?p=4175"},"modified":"2019-08-29T15:23:51","modified_gmt":"2019-08-29T15:23:51","slug":"nuestro-socio-juan-en-los-medios","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/01\/20\/nuestro-socio-juan-en-los-medios\/","title":{"rendered":"Nuestro socio Juan, en los medios."},"content":{"rendered":"\n<p>Podemos leer en la versi\u00f3n digital del peri\u00f3dico La voz de Galicia un fant\u00e1stico art\u00edculo de Luc\u00eda Rey dedicado a nuestro socio Juan. <\/p>\n\n\n\n<p>Reproducimos a continuaci\u00f3n un peque\u00f1o fragmento y os dejamos con el enlace al art\u00edculo completo:<\/p>\n\n\n\n<h1 class=\"wp-block-heading\">Juan toca la bater\u00eda y es un \u00abrey\u00bb del \u00abspinning\u00bb aunque es sordo y ciego<\/h1>\n\n\n\n<p><a><\/a>Un viveirense de 15 a\u00f1os que sufre el extra\u00f1o s\u00edndrome de Charge cursa segundo de ESO y tiene m\u00faltiples aficiones<\/p>\n\n\n\n<p>Todas las personas, \u00abpero especialmente os cargos p\u00fablicos\u00bb, deber\u00edan pasar un d\u00eda con los ojos y los o\u00eddos tapados, sin ver y sin o\u00edr, para darse cuenta de la multitud de&nbsp;<strong>obst\u00e1culos f\u00edsicos, pero tambi\u00e9n emocionales y sociales a los que tiene que enfrentarse a diario alguien que<\/strong>&nbsp;<strong>es sordo y ciego<\/strong>&nbsp;a la vez.&nbsp;\u00abPolo menos deixar\u00edan de vendernos cousas que non son verdade cando falan de que apoian \u00e1s persoas enfermas coa lei de dependencia ou de que facilitan a conciliaci\u00f3n das familias para coidar dos seus&#8230;\u00bb, reflexiona Luisa G\u00f3mez, vecina de Viveiro con un&nbsp;<strong>hijo sordociego<\/strong>&nbsp;que el pr\u00f3ximo mes de mayo soplar\u00e1 16 velas.<\/p>\n\n\n\n<p>Con un hermano sano que entonces ten\u00eda 6 a\u00f1os, despu\u00e9s de un embarazo normal -\u00abfoi un neno moi desexado\u00bb, sonr\u00ede la mujer- y sin antecedentes familiares, nada hac\u00eda presagiar todas las adversidades con las que se iba a encontrar el peque\u00f1o Juan, cuyo diagn\u00f3stico actual se\u00f1ala que padece s\u00edndrome de Charge, una enfermedad rara que tiene asociadas distintas patolog\u00edas.&nbsp;\u00abNaceu cun peso de 3,8 quilos, foi un neno grande, pero \u00eda consum\u00edndose&#8230;\u00bb, recuerda la madre, que relata que el primer reto fue conseguir alimentarlo porque el beb\u00e9 no era capaz de comer. Y ah\u00ed empez\u00f3 una odisea que, con momentos muy duros y otros de m\u00e1s calma, contin\u00faa hasta hoy.&nbsp;\u00abVolves \u00e1 t\u00faa vida ordinaria cunha criatura con necesidades especiais e sen ning\u00fan tipo de orientaci\u00f3n. Ningu\u00e9n nos asesorou, ningu\u00e9n nos ofreceu apoio psicol\u00f3xico&#8230; M\u00e9dicos, pediatras, especialistas, depois profesores&#8230;, todos deron paus de cego con Juan\u00bb, contin\u00faa la mujer&#8230;[&#8230;]<\/p>\n\n\n\n<p>Pod\u00e9is leer el resto del art\u00edculo en el siguiente enlace: <\/p>\n\n\n\n<p><a href=\"https:\/\/www.lavozdegalicia.es\/noticia\/amarina\/burela\/2019\/01\/20\/juan-toca-bateria-rey-spinning-sordo-ciego\/0003_201901G20P27992.htm\">Juan toca la bater\u00eda y es un \u00abrey\u00bb del \u00abspinning\u00bb aunque es sordo y ciego.<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Podemos leer en la versi\u00f3n digital del peri\u00f3dico La voz de Galicia un fant\u00e1stico art\u00edculo de Luc\u00eda Rey dedicado a nuestro socio Juan. Reproducimos a continuaci\u00f3n un peque\u00f1o fragmento y os dejamos con el enlace al art\u00edculo completo: Juan toca la bater\u00eda y es un \u00abrey\u00bb del \u00abspinning\u00bb aunque es sordo y ciego Un viveirense [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":318,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[109,103,80,52,8],"tags":[12,102],"class_list":["post-4175","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-asociacion","category-charge","category-gobierno","category-medios","category-noticias","tag-charge","tag-noticias"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Nuestro socio Juan, en los medios. - 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\/2019\/01\/20\/nuestro-socio-juan-en-los-medios\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nuestro socio Juan, en los medios. - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"og:description\" content=\"Podemos leer en la versi\u00f3n digital del peri\u00f3dico La voz de Galicia un fant\u00e1stico art\u00edculo de Luc\u00eda Rey dedicado a nuestro socio Juan. 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