{"id":57178,"date":"2024-11-14T12:22:01","date_gmt":"2024-11-14T17:22:01","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?p=57178"},"modified":"2024-11-14T12:46:21","modified_gmt":"2024-11-14T17:46:21","slug":"tomhas-story-living-with-naa15","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/2024\/11\/14\/tomhas-story-living-with-naa15\/","title":{"rendered":"The Pardos&#8217; Journey with NAA15"},"content":{"rendered":"<p><em>The responses below were originally written in Spanish and translated using a third party service.<\/em><\/p>\n<h3>What is your family like?<\/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\">I am Toto&#8217;s mother, who has a mutation in the NAA15 gene.\u00a0<\/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>Tell us about the biggest hardship you face.<\/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\">My son&#8217;s future.<\/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>What impacts your to participate or not to participate in research?\u00a0<\/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\">I just haven&#8217;t had the opportunity, I would like to.<\/span><\/p>\n<p><em>No he tenido la oportunidad simplemente, me gustaria.<\/em><\/p>\n<h3 class=\"p1\"><b>What is one question you wish researchers could answer about this genetic change?<\/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\">What life expectations are there?<\/span><\/p>\n<p><em>Que expectativas de vida hay.<\/em><\/p>\n<h3 class=\"p1\"><b>What have you learned about your or your child\u2019s genetic condition from other families?<\/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\">I don&#8217;t know any other family.<\/span><\/p>\n<p><em>No conozco 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>If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?<\/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\">That everything can be achieved with therapy, patience and love.<\/span><\/p>\n<p><em>Que todo se puede lograr con terapia, paciencia y amor.<\/em><\/p>\n<h3>How has <span class=\"notranslate\">Simons Searchlight<\/span> served as a resource for you and your family?<\/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\">I found the article interesting.<\/span><\/p>\n<p><em>Me resulto interesante el articulo.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Discover the inspiring story of the Pardos.<\/p>\n","protected":false},"author":28,"featured_media":11980,"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":[16],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/57178"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/users\/28"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=57178"}],"version-history":[{"count":3,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/57178\/revisions"}],"predecessor-version":[{"id":57181,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/57178\/revisions\/57181"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media\/11980"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=57178"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/categories?post=57178"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/tags?post=57178"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}