{"id":14425,"date":"2023-01-12T10:12:48","date_gmt":"2023-01-12T15:12:48","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?p=14425"},"modified":"2023-10-05T11:39:46","modified_gmt":"2023-10-05T15:39:46","slug":"myless-story-living-with-dyrk1a","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/2023\/01\/12\/myless-story-living-with-dyrk1a\/","title":{"rendered":"Myles&#8217;s Story Living with DYRK1A"},"content":{"rendered":"<div>\n<p>&nbsp;<\/p>\n<h3>What is your family like?<\/h3>\n<p>We are a close knit family that live in rural Oklahoma. We are hard working family to stop at nothing to provide and receive services for Myles.<\/p>\n<h3><strong>What do you do for fun?<\/strong><\/h3>\n<p>We enjoy watching him do water and horse therapy. We enjoy playing with our two boys.<\/p>\n<h3><strong>Tell us about the biggest hardship you face.<\/strong><\/h3>\n<p>We live so far from providers and services that Myles requires.<\/p>\n<h3><strong>What motivates you to participate in research?\u00a0<\/strong><\/h3>\n<p>To get more research and answers about his genetic condition.<\/p>\n<\/div>\n<h3 data-mlm-field=\"research_impact\" data-mlm-type=\"label\">How do you feel you are helping <span class=\"notranslate\">Simons Searchlight<\/span> learn more about rare genetic changes?<\/h3>\n<div>\n<div class=\"response-question-content\">\n<div class=\"response-container essay ta-response-item\">\n<p>I am providing data and surveys.<\/p>\n<h3><strong>What is one question you wish researchers could answer about this genetic change?<\/strong><\/h3>\n<p class=\"response-text openended-response-text\">I wish I knew if it affects their life expectancy. What will my boys&#8217; future look like.<\/p>\n<\/div>\n<\/div>\n<h3><strong>What have you learned about your or your child\u2019s genetic condition from other families?<\/strong><\/h3>\n<p>I was able to find a private Facebook group to learn and share questions.<\/p>\n<h3><strong>If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?<\/strong><\/h3>\n<p>Take a DEEP breath. It will be ok, I know this is earth-shattering news. Your child will make leaps and goals in their own time.<\/p>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>Learn more about Myles, a 4-year-old living with DYRK1A.<\/p>\n","protected":false},"author":18,"featured_media":14428,"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\/14425"}],"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\/18"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=14425"}],"version-history":[{"count":7,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/14425\/revisions"}],"predecessor-version":[{"id":14468,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/14425\/revisions\/14468"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media\/14428"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=14425"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/categories?post=14425"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/tags?post=14425"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}