{"id":12763,"date":"2022-06-06T13:46:40","date_gmt":"2022-06-06T17:46:40","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?p=12763"},"modified":"2023-10-05T11:39:50","modified_gmt":"2023-10-05T15:39:50","slug":"rowans-story","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/2022\/06\/06\/rowans-story\/","title":{"rendered":"Rowan’s SETD2 Story"},"content":{"rendered":"

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

We are a family of 4. I have 2 sons, ages 13 and 10, and we have 2 dogs- 1 is a service dog for my 10 year old. My 10 year old son has SETD2 related syndrome.<\/p>\n

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

We love to go camping, swimming, quading, and having scary movie nights.<\/p>\n

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

The biggest challenges are health-related challenges with my son and him having autism, intellectual disability, and severe episodes of aggression and challenging behavior.<\/p>\n

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

With my son being diagnosed there is limited research, no cures, no treatments- no map to say what will happen or what to expect. I hope with further research, families after mine- won’t have to sit and think about the what “ifs” as much as we do.<\/p>\n

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

By sharing our story.<\/p>\n

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

What can we expect in the future?<\/p>\n

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

That it appears to be a spectrum condition.<\/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

Find your SETD2 family, make friends, share you story, and never lose hope.<\/p>\n","protected":false},"excerpt":{"rendered":"

Learn more about Rowan’s SETD2 story.<\/p>\n","protected":false},"author":18,"featured_media":12762,"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\/12763"}],"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=12763"}],"version-history":[{"count":16,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/12763\/revisions"}],"predecessor-version":[{"id":13546,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/12763\/revisions\/13546"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media\/12762"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=12763"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/categories?post=12763"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/tags?post=12763"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}