“Don’t get discouraged. You’re not alone. There will be difficult days and there will be easy days but don’t focus on the future or the “what if” scenarios. Focus on now and take it day by day.”<\/em><\/p>\n Emery is more of a loaner. She only wants to interact with her brother when he has a toy that she wants. Although, he can make her giggle and laugh.<\/p>\n We like to bowl, sight see, play Uno, go to the park, or stay at home and relax watching a movie.<\/p>\n I think finances is the hardest. We want to make sure Emery has the equipment she needs but we are told we make too much money to get assistance.<\/p>\n Just watching her grow and develop. I love watching her try to figure out toys or even just playing with toys. She’s nonverbal so watching the way she interacts with things and people is amazing.<\/p>\n I want others to know they aren’t alone and I want researchers to be able to figure out what all this deletion holds.<\/p>\n I’ve learned that it can take years for a child to talk or even walk and that obesity is something to look for.<\/p>\n Don’t get discouraged. You’re not alone. There will be difficult days and there will be easy days but don’t focus on the future or the “what if” scenarios. Focus on now and take it day by day.<\/p>\n How did this occur? My daughter’s deletion is de novo.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Daniele, Parent of Emery, a 3 year old with a 16p11.2 Deletion “Don’t get discouraged. You’re not alone. There will be difficult days and there will be easy days but don’t focus on the future or the “what if” scenarios. Focus on now and take it day by day.” What is your child\u2019s relationship […]<\/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\/4975"}],"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=4975"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/4975\/revisions"}],"predecessor-version":[{"id":4977,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/4975\/revisions\/4977"}],"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=4975"}],"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
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