“Read through the stories of other families but know that no two MED13L children are the same.”<\/em><\/p>\n The only time my daughter “comes alive” is when she’s around her brothers!<\/p>\n We love traveling and hitting the museums. We’re also really in to music.<\/p>\n The potential future for our daughter. It will impact my sons the most after my husband and I are gone.<\/p>\n She giggles all of the time and her laugh is infectious!<\/p>\n Helping others and hopefully bringing awareness to fund therapy.<\/p>\n I wish there were active studies we could participate in.<\/p>\n That the future is uncertain and that we need to inundate our child with as much love and therapy as possible.<\/p>\n Read through the stories of other families but know that no two MED13L children are the same.<\/p>\n How close to typical or how far away from typical will she be?<\/p>\n","protected":false},"excerpt":{"rendered":" By: the parent of a child with a MED13L genetic change “Read through the stories of other families but know that no two MED13L children are the same.” What is your child\u2019s relationship like with his\/her siblings? The only time my daughter “comes alive” is when she’s around her brothers! What does your family do […]<\/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\/5170"}],"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=5170"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5170\/revisions"}],"predecessor-version":[{"id":5171,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5170\/revisions\/5171"}],"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=5170"}],"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
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