“Don’t give up. Keep researching to find ways to deal with future issues that may arise”<\/em><\/p>\n They get along most of the time<\/p>\n Go to the movies<\/p>\n My 17 year old daughter had two scoliosis surgeries and for two years started having neurological symptoms. We went to several doctors and just recently she has been diagnosed with 16p11.2 duplication also ptsd, depression anxiety disorder and panic attacks. I just got my 19 year old son with aspergers to graduate from high school and now in college. It has been difficult but I am still pushing through.<\/p>\n Now that we have a diagnosis, she is much more happier.<\/p>\n To learn more about the rare genetic disorder and how her future will look like<\/p>\n I feel that by my daughters unusual symptoms at an older age, the resrarchers can learn more<\/p>\n Not too much yet.<\/p>\n Don’t give up. Keep researching to find ways to deal with future issues that may arise<\/p>\n Why there is no cure.<\/p>\n","protected":false},"excerpt":{"rendered":" By: Barbara, Parent of Sara, a 17 year old with a 16p11.2 duplication “Don’t give up. Keep researching to find ways to deal with future issues that may arise” What is your child\u2019s relationship like with his\/her siblings? They get along most of the time What does your family do for fun? Go to the […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":162,"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\/4931"}],"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=4931"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/4931\/revisions"}],"predecessor-version":[{"id":4932,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/4931\/revisions\/4932"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/162"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=4931"}],"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