{"id":50020,"date":"2024-06-10T14:38:32","date_gmt":"2024-06-10T18:38:32","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?p=50020"},"modified":"2024-06-25T16:18:02","modified_gmt":"2024-06-25T20:18:02","slug":"junipers-story-living-with-asxl3","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/2024\/06\/10\/junipers-story-living-with-asxl3\/","title":{"rendered":"The Baileys’ Journey with ASXL3"},"content":{"rendered":"

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

We are a family of five from Michigan!<\/p>\n

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

We love to hang out together playing games and watching sports. We also love being in nature and traveling.<\/p>\n

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

The biggest hardship we face is navigating our youngest daughter Juniper’s ultra-rare genetic condition. This diagnosis comes with many unanswered questions.<\/p>\n

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

What motivates you to participate in research?\u00a0<\/b><\/h3>\n

I participate in research because I’m passionate about potentially easing the lives of families like mine.<\/p>\n

How do you feel you are helping Simons Searchlight<\/span> learn more about rare genetic changes?\u00a0<\/b><\/h3>\n

I participate in every survey they send me!<\/p>\n

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

How the change in the ASXL3 gene relates to pain and how pain symptoms can be more effectively managed.<\/p>\n

What have you learned about your or your child\u2019s genetic condition from other families?<\/b><\/h3>\n

\"\"<\/p>\n

So much! What to expect in the future as well as medication suggestions.<\/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

Get involved with the ARRE Foundation! They will be your greatest support.<\/p>\n","protected":false},"excerpt":{"rendered":"

Discover the inspiring story of the Baileys.<\/p>\n","protected":false},"author":28,"featured_media":50021,"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\/50020"}],"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=50020"}],"version-history":[{"count":8,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/50020\/revisions"}],"predecessor-version":[{"id":52629,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/50020\/revisions\/52629"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media\/50021"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=50020"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/categories?post=50020"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/tags?post=50020"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}