“Our children are obviously not like most but the journey we are on is filled with such love and compassion it truely makes you a better person.”<\/em><\/p>\n Riley loves his Big Brothers<\/p>\n Riley enjoys time out and about socializing, we sing and he adores anything that moves, or makes noise like the garbage truck and motor bikes.<\/p>\n Being a single parent with limited help from family and isolation when it comes to Riley being included or safe in normal environments<\/p>\n His smile and laughter. Always happy and inquisitive. His singing and pure innocence. He does not feel hate or greed or jealousy he is just happy to be him.<\/p>\n The possibility of helping my son further and help others like us.<\/p>\n Hopefully we are contributing in ways to benefit us all.<\/p>\n Nothing, I am yet to find a child like Riley.<\/p>\n Our children are obviously not like most but the journey we are on is filled with such love and compassion it truely makes you a better person.<\/p>\n How do we correct this to give him control of his life?<\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" By: Connie, Parent of Riley, a 7 year old with an STXBP1 genetic change “Our children are obviously not like most but the journey we are on is filled with such love and compassion it truely makes you a better person.” What is your child\u2019s relationship like with his\/her siblings? Riley loves his Big Brothers […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":584,"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\/4805"}],"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=4805"}],"version-history":[{"count":2,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/4805\/revisions"}],"predecessor-version":[{"id":4807,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/4805\/revisions\/4807"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/584"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=4805"}],"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