“Take it one day at a time. I have learned that thinking too much and too far isn’t helpful.”<\/em><\/p>\n Only child.<\/p>\n Take walks, watch movies and visit with family.<\/p>\n Having a lot of people not understand her being nonverbal. Places not being accommodating.<\/p>\n How happy she is. Her laugh when she plays peek a boo. How she lights up any room she is in.<\/p>\n So more families have more to go on. When we got our diagnosis we didn’t get much to go on.<\/p>\n I hope that we are able to help gather more information for families like us.<\/p>\n Not much really. There isn’t much related to TBR1 that I have been able to find.<\/p>\n Take it one day at a time. I have learned that thinking too much and too far isn’t helpful.<\/p>\n Why it happens.<\/p>\n That even what you have to go on, things aren’t always set in stone.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Katie, Parent of a 3 year old with a TBR1 genetic change “Take it one day at a time. I have learned that thinking too much and too far isn’t helpful.” What is your child\u2019s relationship like with his\/her siblings? Only child. What does your family do for fun? Take walks, watch movies and […]<\/p>\n","protected":false},"author":13,"featured_media":0,"parent":592,"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\/6647"}],"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=6647"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/6647\/revisions"}],"predecessor-version":[{"id":6648,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/6647\/revisions\/6648"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/592"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=6647"}],"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
Is there anything else you would like to share with other families?<\/h3>\n