{"id":57183,"date":"2024-11-14T12:22:01","date_gmt":"2024-11-14T17:22:01","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2024\/11\/14\/de-reis-van-de-pardos-met-naa15\/"},"modified":"2024-11-14T12:22:01","modified_gmt":"2024-11-14T17:22:01","slug":"de-reis-van-de-pardos-met-naa15","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/nl\/2024\/11\/14\/de-reis-van-de-pardos-met-naa15\/","title":{"rendered":"De reis van de Pardos met NAA15"},"content":{"rendered":"<p><em>De reacties hieronder waren oorspronkelijk in het Spaans geschreven en zijn vertaald met behulp van een externe service.<\/em><\/p>\n<h3>Hoe ziet jouw familie eruit?<\/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\">Ik ben de moeder van Toto, die een mutatie heeft in het NAA15-gen.  <\/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>Vertel ons over de grootste ontbering waar je mee te maken hebt.<\/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\">De toekomst van mijn zoon.<\/span><\/p>\n<p dir=\"ltr\" data-placeholder=\"Translation\" aria-label=\"Translated text\" data-ved=\"2ahUKEwi8wfTfs72HAxXSmIkEHY2OAdkQ3ewLegQIBxAU\"><em>De toekomst van mijn zoon.<\/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>Wat be\u00efnvloedt uw beslissing om wel of niet deel te nemen aan onderzoek?  <\/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\">Ik heb alleen nog niet de kans gehad, maar ik zou het wel graag willen.<\/span><\/p>\n<p><em>No he tenido la oportunidad simplemente, me gustaria.<\/em><\/p>\n<h3 class=\"p1\"><b>Wat is \u00e9\u00e9n vraag waarvan je zou willen dat onderzoekers die konden beantwoorden over deze genetische verandering?<\/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\">Welke levensverwachtingen zijn er?<\/span><\/p>\n<p><em>Wat een levensverwachting heb je.<\/em><\/p>\n<h3 class=\"p1\"><b>Wat heb je van andere families geleerd over de genetische aandoening van jou of je kind?<\/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\">Ik ken geen andere familie.<\/span><\/p>\n<p><em>Ik ken geen andere familie.<\/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>Als je \u00e9\u00e9n advies zou mogen geven aan iemand bij wie onlangs de genetische verandering in jouw familie is vastgesteld, wat zou dat dan zijn?<\/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\">Dat alles bereikt kan worden met therapie, geduld en liefde.<\/span><\/p>\n<p><em>Dat alles mogelijk is met therapie, geduld en liefde.<\/em><\/p>\n<h3>Hoe heeft Simons Zoeklicht jou en je familie geholpen?<\/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\">Ik vond het artikel interessant.<\/span><\/p>\n<p><em>Ik vind het artikel interessant.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Ontdek het inspirerende verhaal van de Pardos.<\/p>\n","protected":false},"author":28,"featured_media":42468,"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":[271],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/posts\/57183"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/users\/28"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/comments?post=57183"}],"version-history":[{"count":0,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/posts\/57183\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/media\/42468"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/media?parent=57183"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/categories?post=57183"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/nl\/wp-json\/wp\/v2\/tags?post=57183"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}