{"id":9874,"date":"2021-02-22T09:25:50","date_gmt":"2021-02-22T14:25:50","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?page_id=9874"},"modified":"2021-02-22T09:25:50","modified_gmt":"2021-02-22T14:25:50","slug":"kobys-story","status":"publish","type":"page","link":"https:\/\/www.simonssearchlight.org\/research\/what-we-study\/wdfy3\/kobys-story\/","title":{"rendered":"Koby’s Story"},"content":{"rendered":"

By: Kathleen, Parent of Koby, a 1 year old with a WDFY3 genetic change<\/h3>\n

“Be patient.”<\/em><\/p>\n

\"\"<\/p>\n

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

My husband and I are in our early 30’s. We have 6 amazing kiddos. 3 of our children (and myself) all have WDFY3. We are from Central Florida.<\/p>\n

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

We love to go to the beach, go shopping and lay around in our pajamas and watch movies.<\/p>\n

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

Our newest addition Koby. Was born January 2020. He is our 3rd child with WDFY3. He was born with a ruptured omphalocele. And he also suffered an HIE brain injury upon birth. Our oldest WDFY3 kiddo has severe ADHD and mild autism. Our middle child with it has severe ADHD. I’m curious to see how WDFY3 affects Koby as he grows and develops. As an infant he had a delayed newborn startle. He did have trunkal hypotonia. He was delayed in rolling and crawling. But by 12 months he was on track for everything. He’s fully walking and eating and doing amazing now.<\/p>\n

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

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

By: Kathleen, Parent of Koby, a 1 year old with a WDFY3 genetic change “Be patient.” What is your family like? My husband and I are in our early 30’s. We have 6 amazing kiddos. 3 of our children (and myself) all have WDFY3. We are from Central Florida. What do you do for fun? […]<\/p>\n","protected":false},"author":13,"featured_media":0,"parent":7006,"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\/9874"}],"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=9874"}],"version-history":[{"count":3,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/9874\/revisions"}],"predecessor-version":[{"id":9878,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/9874\/revisions\/9878"}],"up":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/7006"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=9874"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}