“To take it one step at a time, do your research and prepare to ask for help”<\/em><\/p>\n Swimming, parties, outings and family gatherings.<\/p>\n Ill health and managing our daughters kbg syndrome with all the symptoms that come with it. Getting the right treatments and services<\/p>\n Her singing and sense of humor<\/p>\n To find a cure and for more awareness<\/p>\n I am not sure<\/p>\n That the symptoms are unique to kbg and the similarity in facial features and behaviors.<\/p>\n To take it one step at a time, do your research and prepare to ask for help.<\/p>\n What caused it.<\/p>\n Living with a child with KBG syndrome is very demanding but the rewards are huge, don’t ever give up fighting.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Trena, Parent of Emily, a 10 year old with an ANKRD11 genetic change “To take it one step at a time, do your research and prepare to ask for help” What does your family do for fun? Swimming, parties, outings and family gatherings. Tell us about the biggest hardship your family faces. Ill health […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":404,"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\/5243"}],"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\/25"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=5243"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5243\/revisions"}],"predecessor-version":[{"id":5244,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5243\/revisions\/5244"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/404"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=5243"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}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