“Do not give up. Take all the necessary treatments. Get help from those who can. The earlier you start treating, the better you see change. Give him all the tools.”<\/em><\/p>\n Happy, loving.<\/p>\n Going to the sea, traveling to the extended family, hiking.<\/p>\n When we were told that our son had a medical problem.<\/p>\n Get more information about the garden so I can help my son more and bring him to his maximum.<\/p>\n Will my son grow up to be independent? Will he catch up?<\/p>\n We were told it was a rare (condition) so I did not get to talk to other families.<\/p>\n Do not give up. Take all the necessary treatments. Get help from those who can. The earlier you start treating, the better you see change. Give him all the tools.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Parent of a 3 year old with a KMT5B genetic change “Do not give up. Take all the necessary treatments. Get help from those who can. The earlier you start treating, the better you see change. Give him all the tools.” What is your family like? Happy, loving. What do you do for fun? […]<\/p>\n","protected":false},"author":13,"featured_media":0,"parent":9047,"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\/11220"}],"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=11220"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/11220\/revisions"}],"predecessor-version":[{"id":11221,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/11220\/revisions\/11221"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/9047"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=11220"}],"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 impacts your decision to participate or not to participate in research?<\/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