“Reach out to other families or support groups, spend as much time with them and never accept just any reports research and network as well.”<\/em><\/p>\n She loves her sister and brothers, she’s rough and fiesty but constantly asks about them when they are not in sight.<\/p>\n Hang out at home, shop and visit grandma.<\/p>\n People not understanding that although my child is 7 soon to be 8 she has the mind and mannerism of a much younger child.<\/p>\n Her resiliency and personality, which has earned her the names “Miss Sassy\/Personality”.<\/p>\n The desire to learn more about my child as she grows older.<\/p>\n I’m not sure maybe I can offer answers to unknown questions as well as encouragement.<\/p>\n Not much just that every case is different and about other various symptoms that may be experienced.<\/p>\n Reach out to other families or support groups, spend as much time with them and never accept just any reports research and network as well.<\/p>\n Is there any known life expectancy age for children with this deletion?<\/p>\n Trust and believe that God would not put more on you than you can bear. My youngest is my anchor and my biggest blessing.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Katrina, Parent of Re’Jae, a 7 year old with a 1q21.1 Deletion “Reach out to other families or support groups, spend as much time with them and never accept just any reports research and network as well.” What is your child\u2019s relationship like with his\/her siblings? She loves her sister and brothers, she’s rough […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":163,"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\/5128"}],"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=5128"}],"version-history":[{"count":5,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5128\/revisions"}],"predecessor-version":[{"id":6302,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5128\/revisions\/6302"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/163"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=5128"}],"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