“Find a support group or community if you can. It may be hard to find the right one, but don’t give up.”<\/em><\/p>\n The sibling relationship seems semi normal to me. They fight, they play and get along. But my child with the deletion is aggressive towards her brother.<\/p>\n We like to go to the park and watch movies at home.<\/p>\n The biggest hardship is just not know what is going to come next. We do well for a while, then regress. We are always trying to make sure are child had the best and is getting what she needs, and that is exhausting.<\/p>\n Her jokes, her quirky questions and her inquisitive mind. She has a good heat and is funny and sweet.<\/p>\n I want to know more about the deletion and how to help my daughter. I hope our participation in the research will help our daughter as well as other children and adults who have this deletion.<\/p>\n I have not reached out yet, but I plan on doing so.<\/p>\n Find a support group or community if you can. It may be hard to find the right one, but don’t give up.<\/p>\n What can we do now to prepare her for the future?<\/p>\n I feel really isolated from other families and would like to reach out and share experiences with other families with deletions.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Kelly, Parent of Sydney, a 5 year old with a 1q21.1 Deletion “Find a support group or community if you can. It may be hard to find the right one, but don’t give up.” What is your child\u2019s relationship like with his\/her siblings? The sibling relationship seems semi normal to me. They fight, they […]<\/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\/5124"}],"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=5124"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5124\/revisions"}],"predecessor-version":[{"id":5125,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5124\/revisions\/5125"}],"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=5124"}],"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
Is there anything else you would like to share with other families?<\/h3>\n