{"id":12686,"date":"2022-04-18T11:34:06","date_gmt":"2022-04-18T15:34:06","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?p=12686"},"modified":"2023-10-05T11:39:50","modified_gmt":"2023-10-05T15:39:50","slug":"evans-story","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/2022\/04\/18\/evans-story\/","title":{"rendered":"Evan’s MED13L Story"},"content":{"rendered":"

By: Sarah, parent of Evan who has a MED13L genetic variant<\/p>\n

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

Hello, my name is Sarah and my husband is Steven we have two beautiful boys Eli who is 9, and Evan who is 3 and has MED13L we just found out and feel very stuck in this now what phase.<\/p>\n

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

We love the outdoors, fishing, going to parks, church, and the beach.<\/p>\n

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

The unknown… I don’t know how to help my son and that alone is well just a lot to handle. He is in OT, PT, and speech therapy and will also be starting school in the fall.<\/p>\n

What motivates you to participate in research? How has participating research been helpful for you?<\/strong><\/h3>\n

To help my son and others.<\/p>\n

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

Sharing Evan’s story.<\/p>\n

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

Is there a life span?<\/p>\n

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

Not really much, just in the same boat.<\/p>\n

If you could give one piece of advice to someone recently diagnosed with this genetic variant, what would it be?<\/strong><\/h3>\n

I’m looking for that still we are newly diagnosed.<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Hear about Evan’s experience with his new MED13L diagnosis.<\/p>\n","protected":false},"author":18,"featured_media":12692,"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\/12686"}],"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=12686"}],"version-history":[{"count":9,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/12686\/revisions"}],"predecessor-version":[{"id":12724,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/12686\/revisions\/12724"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media\/12692"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=12686"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/categories?post=12686"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/tags?post=12686"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}