{"id":11279,"date":"2021-10-18T15:44:56","date_gmt":"2021-10-18T19:44:56","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?page_id=11279"},"modified":"2021-10-22T11:23:27","modified_gmt":"2021-10-22T15:23:27","slug":"macis-story","status":"publish","type":"page","link":"https:\/\/www.simonssearchlight.org\/research\/what-we-study\/csnk2a1\/macis-story\/","title":{"rendered":"Maci’s Story"},"content":{"rendered":"

By: Jessica, Parent of Maci, a 4 year old with a CSNK2A1 genetic change<\/h3>\n

“You are not alone in this journey. You have a village behind you. We are all in this together. “<\/em><\/p>\n

\"\"<\/p>\n

What is your family like?<\/h3>\n

Our family involves Dad, Mom, brother, and our sweet Maci.<\/p>\n

What do you do for fun?<\/h3>\n

We are an active family where we often spend our weekends at a dirt bike track, race track, or outside playing in the pool.<\/p>\n

Tell us about the biggest hardship you face.<\/h3>\n

One of our biggest hardship is the lack of knowledge for the future.<\/p>\n

What motivates you to participate in research? How has participating in research been helpful for you?<\/h3>\n

By participating in research, we help pave the future for those who are just finding out about CSNK2A1.<\/p>\n

How do you feel you are helping Simons Searchlight<\/span> learn more about rare genetic changes?<\/h3>\n

By providing as much information we can to the researchers, we are helping the doctors learn more about this specific genetic change and how we can help the future.<\/p>\n

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

What does adulthood look like? Will she be independent? Will she be verbal?<\/p>\n

What have you learned about your or your child’s genetic condition from other families?<\/h3>\n

Other families have shown us that we are not alone in these journey.<\/p>\n

If you could give one piece of advice to someone recently diagnosed with this genetic change, what would it be?<\/h3>\n

You are not alone in this journey. You have a village behind you. We are all in this together.<\/p>\n","protected":false},"excerpt":{"rendered":"

By: Jessica, Parent of Maci, a 4 year old with a CSNK2A1 genetic change “You are not alone in this journey. You have a village behind you. We are all in this together. “ What is your family like? Our family involves Dad, Mom, brother, and our sweet Maci. What do you do for fun? […]<\/p>\n","protected":false},"author":13,"featured_media":0,"parent":8842,"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\/11279"}],"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\/13"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=11279"}],"version-history":[{"count":3,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/11279\/revisions"}],"predecessor-version":[{"id":11331,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/11279\/revisions\/11331"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/8842"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=11279"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}