{"id":62680,"date":"2025-03-27T16:40:23","date_gmt":"2025-03-27T20:40:23","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2025\/03\/27\/il-viaggio-dei-sagon-con-hnrnpk\/"},"modified":"2025-03-27T16:40:23","modified_gmt":"2025-03-27T20:40:23","slug":"il-viaggio-dei-sagon-con-hnrnpk","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/it\/2025\/03\/27\/il-viaggio-dei-sagon-con-hnrnpk\/","title":{"rendered":"Il viaggio dei Sagon con HNRNPK"},"content":{"rendered":"<h3>Com&#8217;\u00e8 la vostra famiglia?<\/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\">La mia famiglia \u00e8 una famiglia normale. Siamo in tre, tra cui mio figlio, mia figlia e poi ci sono io. <\/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>Cosa fate per divertirvi?<\/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\">So ballare, ma lo shopping \u00e8 il mio hobby.<\/p>\n<h3 class=\"p1\"><b>Ci parli della difficolt\u00e0 pi\u00f9 grande che deve affrontare.<\/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.\">La difficolt\u00e0 pi\u00f9 grande che devo affrontare \u00e8 che mio figlio ha una sindrome e non ho idea di come sar\u00e0 la sua vita, perch\u00e9 al momento \u00e8 difficile.<\/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 \u00e8 la domanda a cui vorresti che i ricercatori potessero rispondere su questo cambiamento genetico?<\/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.\">Una domanda a cui vorrei che i ricercatori rispondessero su questa alterazione genetica \u00e8 perch\u00e9 non \u00e8 stata rilevata durante la gravidanza e l&#8217;infanzia, ma poi si \u00e8 presentata come ipotonia intorno ai 2-3 mesi di vita.<\/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 potesse dare un consiglio a qualcuno a cui \u00e8 stata recentemente diagnosticata un&#8217;alterazione genetica nella sua famiglia, quale sarebbe?<\/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.\">Un consiglio che darei a chi ha appena ricevuto la diagnosi \u00e8 che tu sei la loro voce. Se parli per loro, tutto andr\u00e0 bene. <\/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>Scopri la storia ispiratrice dei Sagon.<\/p>\n","protected":false},"author":28,"featured_media":60873,"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":[536],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/posts\/62680"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/users\/28"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/comments?post=62680"}],"version-history":[{"count":0,"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/posts\/62680\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/media\/60873"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/media?parent=62680"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/categories?post=62680"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/it\/wp-json\/wp\/v2\/tags?post=62680"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}