“Stay positive! Don’t dwell on the fact that your child has a condition or a syndrome treat them as an individual. A lot of people don’t like to label their child but sometimes in this day in age it’s a benefit as far as services and what is offered is available to them.”<\/em><\/p>\n Very good! There is a 15yr gap between the two.<\/p>\n Shopping, arcade games, fishing, carnivals, fairs, exploring!<\/p>\n Not being able to give our 14yr old daughter the independence that she deserves and finding her friends and social acceptance.<\/p>\n Her acceptance and understanding of her issues and her patience with the doctor’s! Her love for animals<\/p>\n Knowing everything that I can about the syndrome and preparing me for what the future holds!<\/p>\n Not much! By the time my daughter was diagnosed with the syndrome we had already had encounters with pretty much all the elements or symptoms of the syndrome itself.<\/p>\n Spread the word! The more a family knows about the history of the genetics and their family the more prepared they are for whatever comes their way!<\/p>\n Why! Did it have something to do with my age at conception or my body during the pregnancy or any other factors that my husband could have had or caused!<\/p>\n Stay positive! Don’t dwell on the fact that your child has a condition or a syndrome treat them as an individual. A lot of people don’t like to label their child but sometimes in this day in age it’s a benefit as far as services and what is offered is available to them.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Kimberly, Parent of Kayla, a 14 year old with an ANKRD11 genetic change “Stay positive! Don’t dwell on the fact that your child has a condition or a syndrome treat them as an individual. A lot of people don’t like to label their child but sometimes in this day in age it’s a benefit […]<\/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\/5245"}],"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=5245"}],"version-history":[{"count":2,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5245\/revisions"}],"predecessor-version":[{"id":6282,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5245\/revisions\/6282"}],"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=5245"}],"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
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