“Take it day by day! Live in the moment.”<\/em><\/p>\n His siblings are very protective of him. They don\u2019t play together though as Ethan has never really played with anyone.<\/p>\n We go out to eat, go on vacations, visit family, go for walks, go to church.<\/p>\n Trying to manage everything and everyone! Especially since the world is not wheelchair friendly!<\/p>\n When he smiles\/laughs. When he interacts with me! When he\u2019s having a good day and seems to be totally \u201cwith\u201d us!<\/p>\n To help others.<\/p>\n Pretty much everything I currently know about his mutation is from other families.<\/p>\n Take it day by day! Live in the moment.<\/p>\n Why this happened.<\/p>\n Our children are a precious gift!<\/p>\n","protected":false},"excerpt":{"rendered":" By: April, Parent of Ethan, an 18 year old with an STXBP1 genetic change “Take it day by day! Live in the moment.” What is your child\u2019s relationship like with his\/her siblings? His siblings are very protective of him. They don\u2019t play together though as Ethan has never really played with anyone. What does your […]<\/p>\n","protected":false},"author":13,"featured_media":0,"parent":584,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","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":""},"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/6168"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/users\/13"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=6168"}],"version-history":[{"count":3,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/6168\/revisions"}],"predecessor-version":[{"id":6171,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/6168\/revisions\/6171"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/584"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=6168"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}What is your child\u2019s relationship like with his\/her siblings?<\/h3>\n
What does your family do for fun?<\/h3>\n
Tell us about the biggest hardship your family faces.<\/h3>\n
What about your child puts a smile on your face?<\/h3>\n
What motivates you to participate in research?<\/h3>\n
What have you learned about your child\u2019s condition from other families?<\/h3>\n
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?<\/h3>\n
What is one question you wish researchers could answer about your child\u2019s genetic change?<\/h3>\n
Is there anything else you would like to share with other families?<\/h3>\n