“Take pleasure in your child’s achievements no matter how small they me be.”<\/em><\/p>\n Swim, walk, shop<\/p>\n Getting dietary advice and help with Laura\u2019s food compulsion and weight management<\/p>\n Discos, being with her friends at college and youth club<\/p>\n To help professionals and parents have a better understanding of the syndrome<\/p>\n Providing information about traits\/symptoms of a MED13L child<\/p>\n That many children are similar to my daughter especially hypertonia, high pain threshold and self injury<\/p>\n Go with your instincts regarding parenting – the professionals don’t have all the answers.<\/p>\n If it is possible to alter the deletion in order to change metabolism<\/p>\n Take pleasure in your child’s achievements no matter how small they me be.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Julie, Parent of Laura, a 23 year old with a MED13L genetic change “Take pleasure in your child’s achievements no matter how small they me be.” What does your family do for fun? Swim, walk, shop Tell us about the biggest hardship your family faces. Getting dietary advice and help with Laura\u2019s food compulsion […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":532,"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\/5160"}],"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=5160"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5160\/revisions"}],"predecessor-version":[{"id":5161,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5160\/revisions\/5161"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/532"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=5160"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}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
How do you feel you are impacting our understanding of the genetic changes being studied in Simons Searchlight<\/span> (16p11.2, 1q21.1, or single gene changes)?<\/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