“Take things one day at a time. Also, get involved. It has helped me push through the isolation and fear I initially felt when we got the diagnosis.”<\/em><\/p>\n They love each other. They like to giggle and smile together, and sometimes play with toys.<\/p>\n Spend time with each other. This might be going on a family walk or watching a movie together.<\/p>\n The unknown of what will happen with our atypical child.<\/p>\n He is the sweetest and happiest child. Just being with him can put a smile on your face.<\/p>\n To help medicine and research to move forward in finding better treatments and hopefully one day a cure.<\/p>\n Helping researchers understand his disorder so they can better design studies.<\/p>\n To take things one day at a time.<\/p>\n The same as above – to take things one day at a time. Also, get involved. It has helped me push through the isolation and fear I initially felt when we got the diagnosis.<\/p>\n Why are there such differences in the way the gene is expressed between our kids?<\/p>\n","protected":false},"excerpt":{"rendered":" By: Jackie, Parent of Alex, an 18 month old with an STXBP1 genetic change “Take things one day at a time. Also, get involved. It has helped me push through the isolation and fear I initially felt when we got the diagnosis.” What is your child\u2019s relationship like with his\/her siblings? They love each other. […]<\/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\/7363"}],"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=7363"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/7363\/revisions"}],"predecessor-version":[{"id":7364,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/7363\/revisions\/7364"}],"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=7363"}],"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
How do you feel you are impacting our understanding of the genetic changes being studied in Simons Searchlight<\/span> (16p11.2, 1q21.1, or single gene changes)?<\/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