“Look for Facebook groups to join and reach out to other families. It’s been great to have that camaraderie!”<\/em><\/p>\n She is very close to her siblings and loves them! Her sister is her very best friend. They play house all the time together.<\/p>\n Go on trips, go to the park, play outside, go to concerts or plays, and enjoy time with our immediate and extended families.<\/p>\n In regards to the deletion? I would say as a family we don’t face any hardships because of it. She has quite a gross motor delay and she herself would probably say that is her greatest hardship.<\/p>\n She is very funny and keeps us laughing always!<\/p>\n To help my child and other children who have this deletion.<\/p>\n I hope by adding our child’s story that we can provide another puzzle piece into the mystery of 16p11.2 deletion.<\/p>\n That is definitely has a huge variation based on the individual child and what category\/group your child’s deletion falls.<\/p>\n If your child is young or an infant, don’t think that all hope is lost. I thought our daughter would never walk. She didn’t put any weight on her legs until 17 months! She is now running and jumping all over the place at 3<\/p>\n I would love if there was every day where they could find a way to replace the missing genes.<\/p>\n Look for Facebook groups to join and reach out to other families. It’s been great to have that camaraderie!<\/p>\n","protected":false},"excerpt":{"rendered":" By: the parent of Gracie, a 3 year old with a 16p11.2 Deletion “Look for Facebook groups to join and reach out to other families. It’s been great to have that camaraderie!” What is your child\u2019s relationship like with his\/her siblings? She is very close to her siblings and loves them! Her sister is her […]<\/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\/5034"}],"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=5034"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5034\/revisions"}],"predecessor-version":[{"id":5035,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5034\/revisions\/5035"}],"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=5034"}],"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
Is there anything else you would like to share with other families?<\/h3>\n