{"id":62681,"date":"2025-03-27T16:40:23","date_gmt":"2025-03-27T20:40:23","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2025\/03\/27\/a-jornada-dos-sagons-com-o-hnrnpk\/"},"modified":"2025-03-27T16:40:23","modified_gmt":"2025-03-27T20:40:23","slug":"a-jornada-dos-sagons-com-o-hnrnpk","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/pt-br\/2025\/03\/27\/a-jornada-dos-sagons-com-o-hnrnpk\/","title":{"rendered":"A jornada dos Sagons com o HNRNPK"},"content":{"rendered":"<h3>Como \u00e9 sua fam\u00edlia?<\/h3>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwiKo7raoNyJAxXFK1kFHZOGOr4Q3ewLegQICRAW\" aria-label=\"Translated text: I am Toto's mother with a mutation in GENE NAA 15\">Minha fam\u00edlia \u00e9 uma fam\u00edlia comum. Somos tr\u00eas pessoas, incluindo meu filho, minha filha e eu. <\/p>\n<h3 dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwiKo7raoNyJAxXFK1kFHZOGOr4Q3ewLegQICRAW\" aria-label=\"Translated text: I am Toto's mother with a mutation in GENE NAA 15\"><strong>O que voc\u00ea faz para se divertir?<\/strong><\/h3>\n<p dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwiKo7raoNyJAxXFK1kFHZOGOr4Q3ewLegQICRAW\" aria-label=\"Translated text: I am Toto's mother with a mutation in GENE NAA 15\">Eu sei dan\u00e7ar, mas fazer compras \u00e9 meu hobby.<\/p>\n<h3 class=\"p1\"><b>Fale-nos sobre a maior dificuldade que voc\u00ea enfrenta.<\/b><\/h3>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwi7_uic88-IAxX0kYkEHTnwJWkQ3ewLegQICBAU\" aria-label=\"Translated text: His illness. His pathology prevents him from having a normal quality of life. His fragility caused by pharyngitis prevents him from enjoying the outdoors except when the weather is very nice. His low muscle tone prevents him from running in the garden When he is sick, he decompensates too quickly.\">A maior dificuldade que enfrento \u00e9 o fato de meu filho ter uma s\u00edndrome da qual n\u00e3o tenho ideia de como ser\u00e1 a vida para ele, pois no momento \u00e9 dif\u00edcil.<\/p>\n<h3 class=\"p1\"><b><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-16089 alignleft\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-300x300.png\" alt=\"\" width=\"204\" height=\"204\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-300x300.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-1024x1024.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-150x150.png 150w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-768x768.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-1536x1536.png 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-2048x2048.png 2048w\" sizes=\"(max-width: 204px) 100vw, 204px\" \/><\/b><\/h3>\n<h3 class=\"p1\"><b>Qual \u00e9 a pergunta que voc\u00ea gostaria que os pesquisadores pudessem responder sobre essa mudan\u00e7a gen\u00e9tica?<\/b><\/h3>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwiKo7raoNyJAxXFK1kFHZOGOr4Q3ewLegQICRAW\" aria-label=\"Translated text: I don't know any other family.\">Uma pergunta que eu gostaria que os pesquisadores respondessem sobre essa altera\u00e7\u00e3o gen\u00e9tica \u00e9 por que ela n\u00e3o foi detectada durante a gravidez e a inf\u00e2ncia, mas depois se apresentou como hipotonia por volta dos 2 a 3 meses de idade.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-15175 alignright\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-300x300.png\" alt=\"\" width=\"173\" height=\"173\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-300x300.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-1024x1024.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-150x150.png 150w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-768x768.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-1536x1536.png 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-2048x2048.png 2048w\" sizes=\"(max-width: 173px) 100vw, 173px\" \/><\/p>\n<h3 class=\"p1\"><b>Se voc\u00ea pudesse dar um conselho a algu\u00e9m recentemente diagnosticado com a altera\u00e7\u00e3o gen\u00e9tica em sua fam\u00edlia, qual seria?<\/b><\/h3>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwiKo7raoNyJAxXFK1kFHZOGOr4Q3ewLegQICRAW\" aria-label=\"Translated text: That everything can be achieved with therapy, patience and love.\">Um conselho que eu daria a algu\u00e9m que acabou de ser diagnosticado seria: VOC\u00ca \u00c9 A VOZ DELE. Se voc\u00ea falar por eles, tudo ficar\u00e1 bem. <\/p>\n<p id=\"tw-target-text\" class=\"tw-data-text tw-text-large tw-ta\" dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwi7_uic88-IAxX0kYkEHTnwJWkQ3ewLegQICBAU\" aria-label=\"Translated text: By giving hope in this long journey\">\n","protected":false},"excerpt":{"rendered":"<p>Descubra a hist\u00f3ria inspiradora dos Sagons.<\/p>\n","protected":false},"author":28,"featured_media":60874,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[298],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/posts\/62681"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/users\/28"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/comments?post=62681"}],"version-history":[{"count":0,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/posts\/62681\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/media\/60874"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/media?parent=62681"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/categories?post=62681"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/tags?post=62681"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}