{"id":13468,"date":"2023-03-07T04:46:00","date_gmt":"2023-03-07T07:46:00","guid":{"rendered":"https:\/\/vidasraras.org.br\/sitewp\/?p=13468"},"modified":"2023-03-07T04:46:01","modified_gmt":"2023-03-07T07:46:01","slug":"anna-luz-uma-menina-cheia-de-luz","status":"publish","type":"post","link":"https:\/\/vidasraras.org.br\/sitewp\/anna-luz-uma-menina-cheia-de-luz\/","title":{"rendered":"Anna Luz, uma menina cheia de luz"},"content":{"rendered":"\n<p>Ol\u00e1 gente bom dia!\u00a0<\/p>\n\n\n\n<p><br>Anna Luz tem 8 anos e possui duas doen\u00e7as raras e distintas, uma \u00e9 a s\u00edndrome nescav do gene kif1a, uma doen\u00e7a neurol\u00f3gica que causa v\u00e1rias desordens clinicamente caracterizada por levar a atraso no desenvolvimento neuropsicomotor, defici\u00eancia intelectual, ataxia, epilepsia, microcefalia, paraplegia espatica, neuropatia periferia, atrofia cortical e cerebelar, atrofia \u00f3ptica.\u00a0<\/p>\n\n\n\n<p><br>A defici\u00eancia de ornitina transcarbam\u00edlase, gene OTC, \u00e9 uma doen\u00e7a metab\u00f3lica que tr\u00e1s o atraso neuropsicomotor, d\u00e9ficit cognitivo, irritabilidade, altera\u00e7\u00e3o psiqui\u00e1trica, d\u00e9ficit no crescimento somatico, altera\u00e7\u00e3o da fun\u00e7\u00e3o hep\u00e1tica, epis\u00f3dios de v\u00f4mitos, letargia e coma.\u00a0<\/p>\n\n\n\n<p><br>A s\u00edndrome nescav kif1a, n\u00e3o existe cura, fazemos com Anna Luz um intensivo tratamento de reabilita\u00e7\u00e3o e preven\u00e7\u00e3o.\u00a0<br>Com rela\u00e7\u00e3o a OTC fazemos uma dieta rigorosa com a prote\u00edna animal a n\u00edvel de manter a am\u00f4nia e o \u00e1cido orotico normais.\u00a0<\/p>\n\n\n\n<p><br>Vivemos pela f\u00e9 e n\u00e3o pela raz\u00e3o.\u00a0<br><\/p>\n\n\n\n<p>Conhe\u00e7am a nossa hist\u00f3ria no @vivendocomataxia\u00a0<br>Obrigada.\u00a0<\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-large\"><img loading=\"lazy\" width=\"1024\" height=\"1024\" src=\"https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877-1-1024x1024.jpg\" alt=\"\" class=\"wp-image-13470\" srcset=\"https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877-1-1024x1024.jpg 1024w, https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877-1-300x300.jpg 300w, https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877-1-150x150.jpg 150w, https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877-1-600x600.jpg 600w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/figure><\/div>\n","protected":false},"excerpt":{"rendered":"<p>Ol\u00e1 gente bom dia!\u00a0 Anna Luz tem 8 anos e&hellip;<\/p>\n<p> <a class=\"more-link\" href=\"https:\/\/vidasraras.org.br\/sitewp\/anna-luz-uma-menina-cheia-de-luz\/\">Leia mais<\/a><\/p>\n","protected":false},"author":6,"featured_media":13469,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[256],"tags":[],"uagb_featured_image_src":{"full":["https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877.jpg",1080,1218,false],"thumbnail":["https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877-150x150.jpg",150,150,true],"medium":["https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877-266x300.jpg",266,300,true],"medium_large":["https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877-768x866.jpg",768,866,true],"large":["https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877-908x1024.jpg",800,902,true],"1536x1536":["https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877.jpg",1080,1218,false],"2048x2048":["https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877.jpg",1080,1218,false],"ultp_layout_landscape_large":["https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877-1080x800.jpg",1080,800,true],"ultp_layout_landscape":["https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877-870x570.jpg",870,570,true],"ultp_layout_portrait":["https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877-600x900.jpg",600,900,true],"ultp_layout_square":["https:\/\/vidasraras.org.br\/sitewp\/wp-content\/uploads\/2023\/03\/FB_IMG_1626901050877-600x600.jpg",600,600,true]},"uagb_author_info":{"display_name":"Conte Sua Hist\u00f3ria","author_link":"https:\/\/vidasraras.org.br\/sitewp\/author\/contesuahistoria\/"},"uagb_comment_info":15,"uagb_excerpt":"Ol\u00e1 gente bom dia!\u00a0 Anna Luz tem 8 anos e&hellip; Leia mais","_links":{"self":[{"href":"https:\/\/vidasraras.org.br\/sitewp\/wp-json\/wp\/v2\/posts\/13468"}],"collection":[{"href":"https:\/\/vidasraras.org.br\/sitewp\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/vidasraras.org.br\/sitewp\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/vidasraras.org.br\/sitewp\/wp-json\/wp\/v2\/users\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/vidasraras.org.br\/sitewp\/wp-json\/wp\/v2\/comments?post=13468"}],"version-history":[{"count":1,"href":"https:\/\/vidasraras.org.br\/sitewp\/wp-json\/wp\/v2\/posts\/13468\/revisions"}],"predecessor-version":[{"id":13471,"href":"https:\/\/vidasraras.org.br\/sitewp\/wp-json\/wp\/v2\/posts\/13468\/revisions\/13471"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/vidasraras.org.br\/sitewp\/wp-json\/wp\/v2\/media\/13469"}],"wp:attachment":[{"href":"https:\/\/vidasraras.org.br\/sitewp\/wp-json\/wp\/v2\/media?parent=13468"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/vidasraras.org.br\/sitewp\/wp-json\/wp\/v2\/categories?post=13468"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/vidasraras.org.br\/sitewp\/wp-json\/wp\/v2\/tags?post=13468"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}