“You are your child’s voice & you know your child better than anyone knows their condition.”<\/em><\/p>\n Everything is on her terms so dependent on her mood, although she has a fantastic relationship with her new sister (10 weeks old).<\/p>\n Parks, bowling, swimming. We love film nights in the house.<\/p>\n Her infectious laugh & smile, Her determination to achieve anything she tries & her quirky mannerisms.<\/p>\n To help understand my daughters condition but also to help others understand it too<\/p>\n By looking at all the children individually a bigger understanding of our condition will hopefully be achieved.<\/p>\n That all our children are very similar in lots of ways.<\/p>\n Research as much as possible….you are your child’s voice & you know your child better than anyone knows their condition.<\/p>\n What does the future hold for her?<\/p>\n","protected":false},"excerpt":{"rendered":" By: Rebecca, Parent of Lexi, a 12 year old with a PACS1 genetic change “You are your child’s voice & you know your child better than anyone knows their condition.” What is your child\u2019s relationship like with his\/her siblings? Everything is on her terms so dependent on her mood, although she has a fantastic relationship […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":534,"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\/5175"}],"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=5175"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5175\/revisions"}],"predecessor-version":[{"id":5176,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5175\/revisions\/5176"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/534"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=5175"}],"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
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