{"id":52621,"date":"2024-06-25T16:46:52","date_gmt":"2024-06-25T20:46:52","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?p=52621"},"modified":"2024-07-23T15:30:08","modified_gmt":"2024-07-23T19:30:08","slug":"the-ramos-journey-with-asxl3","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/2024\/06\/25\/the-ramos-journey-with-asxl3\/","title":{"rendered":"The Ramos’ Journey with Bainbridge-Ropers Syndrome"},"content":{"rendered":"

 <\/p>\n

The responses below were originally written in Spanish and translated using a third party service.<\/em><\/p>\n

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

My family is filled with fighters. Despite the adversities, we are happy. There is always fear and worry but with love, faith, and patience we will get ahead.<\/span><\/p>\n

Mi familia es muy luchadora, ah pesar de las adversidades, somos felices. Siempre est\u00e1 el miedo y la preocupaci\u00f3n pero con amor, fe, y paciencia saldremos adelante.<\/em><\/p>\n

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

I like listening to music and going for walks.\u00a0<\/span><\/p>\n

Me gusta la m\u00fasica y salir a pasear.<\/em><\/p>\n

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

At this moment, my epilepsy and my periods of vomiting.\u00a0<\/span><\/p>\n

En este momento mi epilepsia y mis periodos de vomito.\u00a0<\/em><\/p>\n

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

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

Learning more about this syndrome and being informed.\u00a0<\/span><\/p>\n

El aprender m\u00e1s sobre este s\u00edndrome, y estar informados.<\/em><\/p>\n

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

Contributing to statistics to have an idea of \u200b\u200bwhat this syndrome is like.<\/span><\/p>\n

En base a estad\u00edsticas se puede tener una idea de c\u00f3mo es este sindrome.<\/em><\/p>\n

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

If there is a possibility that some of the diseases can be cured.<\/span><\/p>\n

Si, hay posibilidad de que algunas de las enfermedades se pueda curar.<\/em><\/p>\n

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

\"\"<\/p>\n

We are not the only ones, and for the same reason understand why some things happen so we can be more prepared.<\/span><\/p>\n

Que no es la \u00fanica, por lo mismo entender porque suceden algunas cosas y estar m\u00e1s preparado.<\/em><\/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

Much patience, much love.<\/p>\n

Mucha paciencia, mucho amor.<\/em><\/p>\n

How has Simons Searchlight<\/span> served as a resource for you and your family?<\/h3>\n

Simons Searchlight<\/span> has helped us by having a lot of information.<\/p>\n

Mucho, tener informaci\u00f3n ayuda bastante.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

Discover the inspiring story of the Ramos’.<\/p>\n","protected":false},"author":28,"featured_media":52631,"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\/52621"}],"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=52621"}],"version-history":[{"count":7,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/52621\/revisions"}],"predecessor-version":[{"id":52659,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/posts\/52621\/revisions\/52659"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media\/52631"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=52621"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/categories?post=52621"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/tags?post=52621"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}