{"id":11540,"date":"2022-01-04T08:17:20","date_gmt":"2022-01-04T13:17:20","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?page_id=11540"},"modified":"2022-01-05T13:46:12","modified_gmt":"2022-01-05T18:46:12","slug":"kylians-story","status":"publish","type":"page","link":"https:\/\/www.simonssearchlight.org\/research\/what-we-study\/cask\/kylians-story\/","title":{"rendered":"Kylian&#8217;s Story"},"content":{"rendered":"\n<h3 class=\"has-text-align-center wp-block-heading\">By: Nathalie, Parent of Kylian, a 25 year old with a CASK genetic change<\/h3>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"500\" height=\"666\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/01\/04031407\/kylian_sys.jpg\" alt=\"\" class=\"wp-image-11541\"\/><\/figure><\/div>\n\n\n\n<p class=\"has-text-align-center\"><em>&#8220;Try everything, don&#8217;t put any limit on your child.&#8221;<\/em><\/p>\n\n\n\n<h3 class=\"wp-block-heading\">What is your family like?<\/h3>\n\n\n\n<p>We are four: my husband, me, our daughter Morgane (30 years old) and our son Kylian (25 years old).<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">What do you do for fun?<\/h3>\n\n\n\n<p>(Go to the) museum, drawing, reading, hiking, go to music concert(s); travel.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Tell us about the biggest hardship you face.<\/h3>\n\n\n\n<p>I&#8217;m so alone managing everything for my son. He&#8217;s 25 years old and he&#8217;s at home [no school, no(t) (much) social interaction for him and me de facto]. I didn&#8217;t find good professional(s) for special program(s). I need someone to guide me.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">What is one question you wish researchers could answer about this genetic change?<\/h3>\n\n\n\n<p>(Can) you find a synthetic protein to replace the missing protein to make my son&#8217;s brain process normally?<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">What have you learned about your or your child&#8217;s genetic condition from other families?<\/h3>\n\n\n\n<p>I learned a lot during my son&#8217;s childhood from doctors, therapists and my own reading. At this time I didn&#8217;t know any other family (20 years ago).<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">If you could give one piece of advice to someone recently diagnosed with this genetic change, what would it be?<\/h3>\n\n\n\n<p>Try everything, don&#8217;t put any limit on your child.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>By: Nathalie, Parent of Kylian, a 25 year old with a CASK genetic change &#8220;Try everything, don&#8217;t put any limit on your child.&#8221; What is your family like? We are four: my husband, me, our daughter Morgane (30 years old) and our son Kylian (25 years old). What do you do for fun? (Go to [&hellip;]<\/p>\n","protected":false},"author":13,"featured_media":0,"parent":8930,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","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":""},"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/11540"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/users\/13"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=11540"}],"version-history":[{"count":2,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/11540\/revisions"}],"predecessor-version":[{"id":11543,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/11540\/revisions\/11543"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/8930"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=11540"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}