“Hang on for the ride”<\/em><\/p>\n Best friends, horrible enemies<\/p>\n Swim, parks, crafts<\/p>\n Financial. Living far from specialists… becomes nearly impossible to see everyone we need to.<\/p>\n Every time either makes a new advancement<\/p>\n Helping others.<\/p>\n Every little bit helps<\/p>\n Everything!<\/p>\n Hang on for the ride.<\/p>\n Why?<\/p>\n You are not alone.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Betty, Parent of Sophi, a 7 year old with an ANKRD11 genetic change “Hang on for the ride” What is your child\u2019s relationship like with his\/her siblings? Best friends, horrible enemies What does your family do for fun? Swim, parks, crafts Tell us about the biggest hardship your family faces. Financial. Living far from […]<\/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\/5241"}],"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=5241"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5241\/revisions"}],"predecessor-version":[{"id":5242,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5241\/revisions\/5242"}],"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=5241"}],"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