{"id":52043,"date":"2024-05-28T17:01:18","date_gmt":"2024-05-28T21:01:18","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?p=52043"},"modified":"2024-05-28T17:01:18","modified_gmt":"2024-05-28T21:01:18","slug":"richies-story-living-with-gria3","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/2024\/05\/28\/richies-story-living-with-gria3\/","title":{"rendered":"The Sanders’ Journey with GRIA3"},"content":{"rendered":"

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

Richie’s biological dad hasn’t been in his life since 2 years old. My boyfriend, Rob has been in our lives for 3 years and the 3 of us live together. We try our best to live life a day at a time. We love hugs, laughter and spending time with family.<\/p>\n

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

Anything outside, walking around our community, trips to the playground, playing with a soccer ball. We also love playing in front of the mirror and bath time. Richie loves watching wheel of fortune and jeopardy.<\/p>\n

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

Aggression and self harm. Communication has gotten better through sign language, pecs and Richie’s aac device. However it’s still challenging at times. My biggest fear is what happens when I pass away.<\/p>\n

\"\"<\/b><\/h3>\n

What motivates you to participate in research?\u00a0<\/b><\/h3>\n

I want to provide the best life I can for my son while also having an opportunity to help others.<\/p>\n

How do you feel you are helping Simons Searchlight<\/span> learn more about rare genetic changes?\u00a0<\/b><\/h3>\n

I’ll provide any details you would like and will participate with the group.<\/p>\n

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

We need better treatments.<\/p>\n

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

\"\"<\/p>\n

I’ve learned we are not alone and that there are many others out there fighting for a better life for our families.<\/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?<\/b><\/h3>\n

My faith was challenged and I’ve gone through some really dark times. My connection with God is how I have faith, hope, and truly believe we will help our kids.<\/p>\n","protected":false},"excerpt":{"rendered":"

Discover the inspiring story of the Sanders.<\/p>\n","protected":false},"author":28,"featured_media":52044,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","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":""},"categories":[16],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/52043"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/users\/28"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=52043"}],"version-history":[{"count":5,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/52043\/revisions"}],"predecessor-version":[{"id":52055,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/52043\/revisions\/52055"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media\/52044"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=52043"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/categories?post=52043"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/tags?post=52043"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}