{"id":60868,"date":"2025-03-27T16:40:23","date_gmt":"2025-03-27T20:40:23","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?p=60868"},"modified":"2025-03-27T16:45:41","modified_gmt":"2025-03-27T20:45:41","slug":"kaydians-story-living-with-hnrnpk","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/2025\/03\/27\/kaydians-story-living-with-hnrnpk\/","title":{"rendered":"The Sagons’ Journey with HNRNPK"},"content":{"rendered":"

What is your family like?<\/h3>\n

My family is just an average family. It’s three of us including my son, my daughter, and then there’s me.<\/p>\n

What do you do for fun?<\/strong><\/h3>\n

I can dance, but shopping is my hobby.<\/p>\n

Tell us about the biggest hardship you face.<\/b><\/h3>\n

The biggest hardship I face is my son having a syndrome that I have no idea of how life will be for him, as right now it’s difficult.<\/p>\n

\"\"<\/b><\/h3>\n

What is one question you wish researchers could answer about this genetic change?<\/b><\/h3>\n

One question I would like researchers to answer about this genetic change is why was it undetected during pregnancy and infancy, but later presents itself as hypotonia around 2-3 months old.<\/p>\n

\"\"<\/p>\n

If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?<\/b><\/h3>\n

One piece of advice I would give to somebody who was just diagnosed would be YOU ARE THEIR VOICE. If you talk for them everything will be fine.<\/p>\n

\n","protected":false},"excerpt":{"rendered":"

Discover the inspiring story of the Sagons.<\/p>\n","protected":false},"author":28,"featured_media":60869,"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\/60868"}],"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\/28"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=60868"}],"version-history":[{"count":5,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/60868\/revisions"}],"predecessor-version":[{"id":60880,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/60868\/revisions\/60880"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media\/60869"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=60868"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/categories?post=60868"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/tags?post=60868"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}