“Connect with others who share a similar experience.”<\/em><\/p>\n Typical sibling squabbles but can also play really well together.<\/p>\n We love camping, hiking, swimming, and taking trips as a family.<\/p>\n Therapy appointments, time to fit everything in. Worrying about her just being a kid.<\/p>\n She is always happy. She always wants to work and learn. She tries her best. She is friendly and social, and loves talking to people.<\/p>\n I want to help other families and children so they can get the help they need early.<\/p>\n Very similar presentations.<\/p>\n Connect with others who share a similar experience.<\/p>\n What is her risk of developing, if any, later health problems?<\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" By: Laura, Parent of Ashlynn, a 9 year old with a BCL11A genetic change “Connect with others who share a similar experience.” What is your child\u2019s relationship like with his\/her siblings? Typical sibling squabbles but can also play really well together. What does your family do for fun? We love camping, hiking, swimming, and taking […]<\/p>\n","protected":false},"author":13,"featured_media":0,"parent":416,"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\/5290"}],"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\/13"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=5290"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5290\/revisions"}],"predecessor-version":[{"id":5291,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5290\/revisions\/5291"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/416"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=5290"}],"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