{"id":5202,"date":"2019-06-05T11:35:47","date_gmt":"2019-06-05T15:35:47","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?page_id=5202"},"modified":"2019-10-01T08:48:45","modified_gmt":"2019-10-01T12:48:45","slug":"sashas-story","status":"publish","type":"page","link":"https:\/\/www.simonssearchlight.org\/research\/what-we-study\/ddx3x-3-2\/sashas-story\/","title":{"rendered":"Sasha’s Story"},"content":{"rendered":"

\"\"<\/h3>\n

By: Irena, Parent of Sasha, a 4 year old with a DDX3X genetic change<\/h3>\n

“Your life is not over. Your child will grow, blossom, learn, surprise you and beat your expectations. Don\u2019t underestimate your unique child; embrace the differences and find your tribe.”<\/em><\/p>\n

What is your child\u2019s relationship like with his\/her siblings?<\/h3>\n

Sasha and Lenny are twins and share a strong bond. Like any siblings, they sometimes fight for attention and or toys. They complete each other in terms of character traits – Sasha is calm and determined while Lenny is very dramatic.<\/p>\n

What does your family do for fun?<\/h3>\n

We love to vacation in warm destinations, spend time with extended family and friends.<\/p>\n

\"\"<\/p>\n

Tell us about the biggest hardship your family faces.<\/h3>\n

Given a limited number of DDX3X cases known to date, the future is unknown and can be frightening.<\/p>\n

What about your child puts a smile on your face?<\/h3>\n

Sasha has amazing energy and light. She is as sweet as she is determined. She finds joy in smallest things and has a wonderful imagination. Her stories melt our hearts.<\/p>\n

What motivates you to participate in research?<\/h3>\n

We believe in science. We believe finding a cure is possible. We have a unique child and she can make a valuable contribution to science.<\/p>\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

We are the first DDX3X case in the study and hope to broaden your understanding of DDX3X mutation.<\/p>\n

What have you learned about your child\u2019s condition from other families?<\/h3>\n

Every child is unique and children with a mutation are no exception. Within DDX3X group of families we find tremendous support and motivation. DDX3X.org and DDX3X Facebook page are our most insightful resources.<\/p>\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

Your life is not over. Your child will grow, blossom, learn, surprise you and beat your expectations. Don\u2019t underestimate your unique child; embrace the differences and find your tribe.<\/p>\n

What is one question you wish researchers could answer about your child\u2019s genetic change?<\/h3>\n

What can we expect in the future?<\/p>\n

\"\"<\/p>\n","protected":false},"excerpt":{"rendered":"

By: Irena, Parent of Sasha, a 4 year old with a DDX3X genetic change “Your life is not over. Your child will grow, blossom, learn, surprise you and beat your expectations. Don\u2019t underestimate your unique child; embrace the differences and find your tribe.” What is your child\u2019s relationship like with his\/her siblings? Sasha and Lenny […]<\/p>\n","protected":false},"author":25,"featured_media":0,"parent":465,"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\/5202"}],"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=5202"}],"version-history":[{"count":1,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5202\/revisions"}],"predecessor-version":[{"id":5206,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/5202\/revisions\/5206"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/465"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=5202"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}