{"id":57184,"date":"2024-11-14T12:22:01","date_gmt":"2024-11-14T17:22:01","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2024\/11\/14\/el-viaje-de-los-pardos-con-naa15\/"},"modified":"2024-11-14T12:22:01","modified_gmt":"2024-11-14T17:22:01","slug":"el-viaje-de-los-pardos-con-naa15","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/es\/2024\/11\/14\/el-viaje-de-los-pardos-con-naa15\/","title":{"rendered":"El viaje de los Pardos con NAA15"},"content":{"rendered":"<p><em>Las respuestas que figuran a continuaci\u00f3n fueron escritas originalmente en espa\u00f1ol y traducidas mediante un servicio externo.<\/em><\/p>\n<h3>\u00bfC\u00f3mo es su familia?<\/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\">Soy la madre de Toto, que tiene una mutaci\u00f3n en el gen NAA15.  <\/span><\/p>\n<p dir=\"ltr\" data-placeholder=\"Translation\" aria-label=\"Translated text\" data-ved=\"2ahUKEwj-276YyfeGAxXVMVkFHXc2DQ8Q3ewLegQIBRAU\"><em>Soy mama de Toto con mutacion en GEN NAA 15.<\/em><\/p>\n<h3 class=\"p1\"><b>H\u00e1blenos de la mayor dificultad a la que se 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\">El futuro de mi hijo.<\/span><\/p>\n<p dir=\"ltr\" data-placeholder=\"Translation\" aria-label=\"Translated text\" data-ved=\"2ahUKEwi8wfTfs72HAxXSmIkEHY2OAdkQ3ewLegQIBxAU\"><em>El futuro de mi hijo.<\/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>\u00bfQu\u00e9 influye en que participes o no en la investigaci\u00f3n?  <\/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\">Simplemente no he tenido la oportunidad, me gustar\u00eda.<\/span><\/p>\n<p><em>No he tenido la oportunidad simplemente, me gustar\u00eda.<\/em><\/p>\n<h3 class=\"p1\"><b>\u00bfQu\u00e9 pregunta le gustar\u00eda que los investigadores pudieran responder sobre este cambio gen\u00e9tico?<\/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\">\u00bfQu\u00e9 expectativas de vida hay?<\/span><\/p>\n<p><em>Que expectativas de vida hay.<\/em><\/p>\n<h3 class=\"p1\"><b>\u00bfQu\u00e9 ha aprendido de otras familias sobre su enfermedad gen\u00e9tica o la de su hijo?<\/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\">No conozco a ninguna otra familia.<\/span><\/p>\n<p><em>No conozco a otra familia.<\/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>Si pudiera dar un consejo a alguien a quien le hayan diagnosticado recientemente el cambio gen\u00e9tico en su familia, \u00bfcu\u00e1l ser\u00eda?<\/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 todo se puede conseguir con terapia, paciencia y amor.<\/span><\/p>\n<p><em>Que todo se puede lograr con terapia, paciencia y amor.<\/em><\/p>\n<h3>\u00bfC\u00f3mo ha servido <span class=\"notranslate\">Simons Searchlight<\/span> de recurso para ti y tu familia?<\/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\">El art\u00edculo me ha parecido interesante.<\/span><\/p>\n<p><em>Me resulto interesante el articulo.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Descubre la inspiradora historia de los Pardos.<\/p>\n","protected":false},"author":28,"featured_media":17400,"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":[96],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/posts\/57184"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/users\/28"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/comments?post=57184"}],"version-history":[{"count":0,"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/posts\/57184\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/media\/17400"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/media?parent=57184"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/categories?post=57184"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/tags?post=57184"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}