“Embrace and love your child. Enjoy them. No one knows what the future holds. It’s ok to be scared.”<\/em><\/p>\n Loving.<\/p>\n We play games, connect 4, watch movies, read, go to the park. Go on vacations!<\/p>\n The hardest part was in the beginning when our son Theodore was diagnosed with Rubinstein Taybi Syndrome. He had a microdeletion in chromosome 16. We had no where to turn to for answers and at first didn’t know how to cope with his multitude of medical conditions.<\/p>\n His joy and love of life.<\/p>\n To find answers and share the answers with families going through it. To give comfort and understanding to those seeking.<\/p>\n Embrace and love your child. Enjoy them. No one knows what the future holds. It’s ok to be scared.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Amanda, Parent of Theodore, a 3 year old with a 16p11.2 Deletion “Embrace and love your child. Enjoy them. No one knows what the future holds. It’s ok to be scared.” What is your child\u2019s relationship like with his\/her siblings? Loving. What does your family do for fun? We play games, connect 4, watch […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":161,"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\/5010"}],"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=5010"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5010\/revisions"}],"predecessor-version":[{"id":5011,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5010\/revisions\/5011"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/161"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=5010"}],"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
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