{"id":16068,"date":"2023-10-11T11:33:49","date_gmt":"2023-10-11T15:33:49","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?p=16068"},"modified":"2023-10-05T11:39:42","modified_gmt":"2023-10-05T15:39:42","slug":"everleighs-story-living-with-smarca4","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/2023\/10\/11\/everleighs-story-living-with-smarca4\/","title":{"rendered":"Everleigh\u2019s Story Living with SMARCA4"},"content":{"rendered":"

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

I am the mother of 3 girls. My two oldest 17&15 are from my first marriage and my youngest 3.5 is my affected child. Her variant is de novo. It has been a blessing and a challenge for my family. But ultimately we are happy to be pioneers to help others in the future.<\/p>\n

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

We love to swim in our backyard pool and go to the local water park. My affected daughter loves water!<\/p>\n

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

Having to be in the hospital frequently and not with my teens during crucial milestones.<\/p>\n

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

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

I participate in research because there isn’t enough for my needs and I am hopeful that one day enough families will participate and we will begin to compile crucial data for future generations.<\/p>\n

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

I am doing my part by doing all our surveys and tests. The more info they have the faster we can help each other!<\/p>\n

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

What are the key affecting issues in our smarca4 kids and not the generalized CSS diagnosis because ours aren’t affected the same as others.<\/p>\n

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

\"\"<\/p>\n

How very similar our gene group of kids are. The same issues and how they managed them with their care providers.<\/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

Dig in and do your research and your part to get the information in the system! It takes a village!<\/p>\n","protected":false},"excerpt":{"rendered":"

Learn more about Everleigh’s story. <\/p>\n","protected":false},"author":18,"featured_media":16072,"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\/16068"}],"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=16068"}],"version-history":[{"count":4,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/16068\/revisions"}],"predecessor-version":[{"id":16075,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/16068\/revisions\/16075"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media\/16072"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=16068"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/categories?post=16068"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/tags?post=16068"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}