{"id":58213,"date":"2025-01-10T15:10:40","date_gmt":"2025-01-10T20:10:40","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2025\/01\/10\/le-voyage-des-champs-avec-kmt2e\/"},"modified":"2025-01-10T15:10:40","modified_gmt":"2025-01-10T20:10:40","slug":"le-voyage-des-champs-avec-kmt2e","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/fr\/2025\/01\/10\/le-voyage-des-champs-avec-kmt2e\/","title":{"rendered":"Le voyage des champs avec KMT2E"},"content":{"rendered":"<h3>Comment est votre famille ?<\/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\">Mon fils est l&#8217;a\u00een\u00e9 de nos deux enfants adopt\u00e9s.<\/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>Que faites-vous pour vous amuser ?<\/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\">Nous aimons aller \u00e0 King&#8217;s Dominion, au mus\u00e9e des sciences, lire et regarder des films.<\/p>\n<h3 class=\"p1\"><b>Parlez-nous de la plus grande difficult\u00e9 \u00e0 laquelle vous \u00eates confront\u00e9.<\/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.\">Ma fille cadette est actuellement en soins palliatifs.<\/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>Qu&#8217;est-ce qui vous fait sourire chez votre enfant ?<\/h3>\n<p>Son sens de l&#8217;humour.<\/p>\n<h3 class=\"p1\"><b>Qu&#8217;est-ce qui vous motive \u00e0 participer \u00e0 la recherche ? En quoi la participation \u00e0 la recherche vous a-t-elle \u00e9t\u00e9 utile ?<\/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\">J&#8217;esp\u00e8re que nous pourrons aider d&#8217;autres familles.<\/p>\n<h3 dir=\"ltr\" data-placeholder=\"Translation\" data-ved=\"2ahUKEwiKo7raoNyJAxXFK1kFHZOGOr4Q3ewLegQICRAW\" aria-label=\"Translated text: I just haven't had the opportunity, I would like to\"><strong>En quoi pensez-vous aider <span class=\"notranslate\">Simons Searchlight<\/span> \u00e0 en savoir plus sur les changements g\u00e9n\u00e9tiques rares ?<\/strong><\/h3>\n<p>J&#8217;esp\u00e8re que nous sensibilisons les gens \u00e0 KMT2E.<\/p>\n<h3 class=\"p1\"><b>Quelle est la question \u00e0 laquelle vous souhaiteriez que les chercheurs puissent r\u00e9pondre au sujet de ce changement g\u00e9n\u00e9tique ?<\/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?\">Quel est le r\u00f4le de cette mutation g\u00e9n\u00e9tique ?<\/p>\n<h3 class=\"p1\"><b>Qu&#8217;avez-vous appris d&#8217;autres familles sur votre maladie g\u00e9n\u00e9tique ou celle de votre enfant ?<\/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.\">Nous avons de nombreuses similitudes.<\/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 vous pouviez donner un conseil \u00e0 une personne r\u00e9cemment diagnostiqu\u00e9e comme ayant un changement g\u00e9n\u00e9tique dans votre famille, quel serait-il ?<\/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.\">Acceptez d&#8217;\u00eatre unique.<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>D\u00e9couvrez l&#8217;histoire inspirante des Champs.<\/p>\n","protected":false},"author":28,"featured_media":58204,"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":[189],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/58213"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/users\/28"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/comments?post=58213"}],"version-history":[{"count":0,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/posts\/58213\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/media\/58204"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/media?parent=58213"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/categories?post=58213"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/fr\/wp-json\/wp\/v2\/tags?post=58213"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}