“Our kids have amazing drive and amazing courage.”<\/em><\/p>\n Good! Her older siblings adore her.<\/p>\n Play board games, travel and watch movies.<\/p>\n My child is isolated from peers.<\/p>\n Her laughter and her strength.<\/p>\n To understand her syndrome and to hopefully help her.<\/p>\n By her growth in everything thing she does.<\/p>\n That we share a lot of the same symptoms and the family with younger ones follow Alyssa\u2019s growth.<\/p>\n It will get better.<\/p>\n Can we strengthen their weakness from the syndrome?<\/p>\n Our kids have amazing drive and amazing courage.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Patrice, Parent of Alyssa, a 15 year old with a CTNNB1 genetic change “Our kids have amazing drive and amazing courage.” What is your child\u2019s relationship like with his\/her siblings? Good! Her older siblings adore her. What does your family do for fun? Play board games, travel and watch movies. Tell us about the […]<\/p>\n","protected":false},"author":13,"featured_media":0,"parent":445,"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\/5309"}],"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=5309"}],"version-history":[{"count":2,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5309\/revisions"}],"predecessor-version":[{"id":5311,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5309\/revisions\/5311"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/445"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=5309"}],"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