{"id":57182,"date":"2024-11-14T12:22:01","date_gmt":"2024-11-14T17:22:01","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2024\/11\/14\/a-jornada-dos-pardos-com-a-naa15\/"},"modified":"2024-11-14T12:22:01","modified_gmt":"2024-11-14T17:22:01","slug":"a-jornada-dos-pardos-com-a-naa15","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/pt-br\/2024\/11\/14\/a-jornada-dos-pardos-com-a-naa15\/","title":{"rendered":"A jornada dos Pardos com a NAA15"},"content":{"rendered":"<p><em>As respostas abaixo foram originalmente escritas em espanhol e traduzidas usando um servi\u00e7o terceirizado.<\/em><\/p>\n<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\"><span class=\"Y2IQFc\" lang=\"en\">Sou a m\u00e3e de Toto, que tem uma muta\u00e7\u00e3o no gene NAA15.  <\/span><\/p>\n<p dir=\"ltr\" data-placeholder=\"Translation\" aria-label=\"Translated text\" data-ved=\"2ahUKEwj-276YyfeGAxXVMVkFHXc2DQ8Q3ewLegQIBRAU\"><em>Sou m\u00e3e de Toto com muta\u00e7\u00e3o no GEN NAA 15.<\/em><\/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.\"><span class=\"Y2IQFc\" lang=\"en\">O futuro de meu filho.<\/span><\/p>\n<p dir=\"ltr\" data-placeholder=\"Translation\" aria-label=\"Translated text\" data-ved=\"2ahUKEwi8wfTfs72HAxXSmIkEHY2OAdkQ3ewLegQIBxAU\"><em>O futuro de meu filho.<\/em><\/p>\n<h3 class=\"p1\"><b><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-16089 size-medium alignleft\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/09\/11092158\/PEOPLE_man-loves-microscope-300x300.png\" alt=\"\" width=\"300\" height=\"300\" 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: 300px) 100vw, 300px\" \/><\/b><\/h3>\n<h3 class=\"p1\"><b>O que influencia voc\u00ea a participar ou n\u00e3o da pesquisa?  <\/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 just haven't had the opportunity, I would like to\"><span class=\"Y2IQFc\" lang=\"en\">Eu simplesmente n\u00e3o tive a oportunidade, mas gostaria de ter.<\/span><\/p>\n<p><em>Voc\u00ea n\u00e3o teve a oportunidade, simplesmente, eu gostaria.<\/em><\/p>\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: What life expectations are there?\"><span class=\"Y2IQFc\" lang=\"en\">Quais s\u00e3o as expectativas de vida que voc\u00ea tem?<\/span><\/p>\n<p><em>Que expectativas de vida voc\u00ea tem.<\/em><\/p>\n<h3 class=\"p1\"><b>O que voc\u00ea aprendeu sobre a sua condi\u00e7\u00e3o gen\u00e9tica ou a do seu filho com outras fam\u00edlias?<\/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.\"><span class=\"Y2IQFc\" lang=\"en\">N\u00e3o conhe\u00e7o nenhuma outra fam\u00edlia.<\/span><\/p>\n<p><em>Voc\u00ea n\u00e3o conhece outra fam\u00edlia.<\/em><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-15175 size-medium alignright\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092145\/PEOPLE_man-girl-step-hearts-300x300.png\" alt=\"\" width=\"300\" height=\"300\" 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: 300px) 100vw, 300px\" \/><\/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.\"><span class=\"Y2IQFc\" lang=\"en\">Que tudo pode ser alcan\u00e7ado com terapia, paci\u00eancia e amor.<\/span><\/p>\n<p><em>Que tudo possa ser alcan\u00e7ado com terapia, paci\u00eancia e amor.<\/em><\/p>\n<h3>Como o <span class=\"notranslate\">Simons Searchlight<\/span> serviu de recurso para voc\u00ea e 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=\"2ahUKEwi7_uic88-IAxX0kYkEHTnwJWkQ3ewLegQICBAU\" aria-label=\"Translated text: By giving hope in this long journey\"><span class=\"Y2IQFc\" lang=\"en\">Achei o artigo interessante.<\/span><\/p>\n<p><em>Achei interessante o artigo.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Descubra a hist\u00f3ria inspiradora dos Pardos.<\/p>\n","protected":false},"author":28,"featured_media":44912,"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\/57182"}],"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=57182"}],"version-history":[{"count":0,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/posts\/57182\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/media\/44912"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/media?parent=57182"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/categories?post=57182"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/pt-br\/wp-json\/wp\/v2\/tags?post=57182"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}