“Research, study, do everything for your child even if they tell you it won’t work (therapy, exercise, etc). Help your child in everything. Children always amaze you.”<\/em><\/p>\n We are a small family. Giselle is my only daughter.<\/p>\n We go out for a long walk almost every day. We go to the park and let Giselle play. We try to travel a lot to new places so that Giselle knows new experiences. With the pandemic we have not traveled as much.<\/p>\n That Giselle still does not speak and is very innocent and does not recognize the evil of people.<\/p>\n I want to meet more families to share experiences. To know how to help my daughter in everything she can. In addition to knowing if there is any new treatment.<\/p>\n By bringing families together to form a community. Because otherwise you would never know someone who can help you from their own experience.<\/p>\n What causes this genetic problem?<\/p>\n I still don’t know anyone else.<\/p>\n Research, study, do everything for your child even if they tell you it won’t work (therapy, exercise, etc). Help your child in everything. Children always amaze you. And treat him as if he has no problem or disability.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Gris, Parent of Giselle, a 3 year old with a KDM6B genetic change “Research, study, do everything for your child even if they tell you it won’t work (therapy, exercise, etc). Help your child in everything. Children always amaze you.” What is your family like? We are a small family. Giselle is my only […]<\/p>\n","protected":false},"author":13,"featured_media":0,"parent":522,"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\/10013"}],"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=10013"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/10013\/revisions"}],"predecessor-version":[{"id":10014,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/10013\/revisions\/10014"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/522"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=10013"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}What is your family like?<\/h3>\n
What do you do for fun?<\/h3>\n
Tell us about the biggest hardship you face.<\/h3>\n
What motivates you to participate in research? How has participating in research been helpful for you?<\/h3>\n
How do you feel you are helping Simons Searchlight<\/span> learn more about rare genetic changes?<\/h3>\n
What is one question you wish researchers could answer about this genetic change?<\/h3>\n
What have you learned about your or your child’s genetic condition from other families?<\/h3>\n
If you could give one piece of advice to someone recently diagnosed with this genetic change, what would it be?<\/h3>\n