“Keep researching and keep in touch withe other Families and don’t let KBG be swept under the rug because it’s not well known”<\/em><\/p>\n Very close, loving and have a great bond with her.<\/p>\n Any out door activities spend time with each other<\/p>\n Financial<\/p>\n Her living personality, when she smiles her eyes shine and she brightens up the room<\/p>\n You don’t know what you dont know<\/p>\n That we are blessed and fortunate that she is on the lower end of the spectrum<\/p>\n Do as much research as possible get in to KBG forums. You will learn more from families than most specialist.<\/p>\n Keep researching and keep in touch withe other Families and don’t let KBG be swept under the rug because it’s not well known<\/p>\n","protected":false},"excerpt":{"rendered":" By: Becki, Parent of Mia, an 8 year old with an ANKRD11 genetic change “Keep researching and keep in touch withe other Families and don’t let KBG be swept under the rug because it’s not well known” What is your child\u2019s relationship like with his\/her siblings? Very close, loving and have a great bond with […]<\/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\/5255"}],"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=5255"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5255\/revisions"}],"predecessor-version":[{"id":5256,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5255\/revisions\/5256"}],"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=5255"}],"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
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
Is there anything else you would like to share with other families?<\/h3>\n