{"id":50035,"date":"2024-06-10T14:38:32","date_gmt":"2024-06-10T18:38:32","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/2024\/04\/10\/la-historia-de-juniper-vivir-con-asxl3\/"},"modified":"2024-06-25T16:18:12","modified_gmt":"2024-06-25T20:18:12","slug":"la-historia-de-juniper-vivir-con-asxl3","status":"publish","type":"post","link":"https:\/\/www.simonssearchlight.org\/es\/2024\/06\/10\/la-historia-de-juniper-vivir-con-asxl3\/","title":{"rendered":"El viaje de los Bailey con ASXL3"},"content":{"rendered":"<h3>\u00bfC\u00f3mo es su familia?<\/h3>\n<p>Somos una familia de cinco miembros de Michigan.<\/p>\n<h3 class=\"p1\"><b>\u00bfQu\u00e9 hace para divertirse?<\/b><\/h3>\n<p class=\"p2\">Nos encanta pasar el rato juntos jugando y viendo deportes. Tambi\u00e9n nos encanta estar en la naturaleza y viajar.<\/p>\n<h3 class=\"p1\"><b>H\u00e1blenos de la mayor dificultad a la que se enfrenta.<\/b><\/h3>\n<p class=\"p2\">La mayor dificultad a la que nos enfrentamos es la enfermedad gen\u00e9tica ultra rara de nuestra hija menor, Juniper. Este diagn\u00f3stico viene acompa\u00f1ado de muchas preguntas sin respuesta.<\/p>\n<h3 class=\"p1\"><b><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-15139 alignleft\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091933\/PEOPLE_desk-family-e1707309126417-300x220.png\" alt=\"\" width=\"300\" height=\"220\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091933\/PEOPLE_desk-family-e1707309126417-300x220.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091933\/PEOPLE_desk-family-e1707309126417-1024x753.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091933\/PEOPLE_desk-family-e1707309126417-768x564.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091933\/PEOPLE_desk-family-e1707309126417-1536x1129.png 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18091933\/PEOPLE_desk-family-e1707309126417-2048x1505.png 2048w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/b><\/h3>\n<h3 class=\"p1\"><b>\u00bfQu\u00e9 le motiva a participar en la investigaci\u00f3n?  <\/b><\/h3>\n<p class=\"p2\">Participo en la investigaci\u00f3n porque me apasiona la posibilidad de aliviar la vida de familias como la m\u00eda.<\/p>\n<h3 class=\"p1\"><b>\u00bfC\u00f3mo cree que est\u00e1 ayudando a <span class=\"notranslate\">Simons Searchlight<\/span> a conocer mejor las alteraciones gen\u00e9ticas raras?  <\/b><\/h3>\n<p>Participo en todas las encuestas que me env\u00edan.<\/p>\n<h3 class=\"p1\"><b>\u00bfQu\u00e9 pregunta le gustar\u00eda que los investigadores pudieran responder sobre este cambio gen\u00e9tico?<\/b><\/h3>\n<p class=\"p2\">C\u00f3mo se relaciona el cambio en el gen ASXL3 con el dolor y c\u00f3mo se pueden tratar de forma m\u00e1s eficaz los s\u00edntomas de dolor.<\/p>\n<h3 class=\"p1\"><b>\u00bfQu\u00e9 ha aprendido de otras familias sobre su enfermedad gen\u00e9tica o la de su hijo?<\/b><\/h3>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-15176 alignright\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092149\/PEOPLE_man-girl-step-300x300.png\" alt=\"\" width=\"226\" height=\"226\" srcset=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092149\/PEOPLE_man-girl-step-300x300.png 300w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092149\/PEOPLE_man-girl-step-1024x1024.png 1024w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092149\/PEOPLE_man-girl-step-150x150.png 150w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092149\/PEOPLE_man-girl-step-768x768.png 768w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092149\/PEOPLE_man-girl-step-1536x1536.png 1536w, https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/05\/18092149\/PEOPLE_man-girl-step-2048x2048.png 2048w\" sizes=\"(max-width: 226px) 100vw, 226px\" \/><\/p>\n<p class=\"p2\">\u00a1Tanto! Qu\u00e9 esperar en el futuro y sugerencias de medicaci\u00f3n.<\/p>\n<h3 class=\"p1\"><b>Si pudiera dar un consejo a alguien a quien le hayan diagnosticado recientemente el cambio gen\u00e9tico en su familia, \u00bfcu\u00e1l ser\u00eda?<\/b><\/h3>\n<p class=\"p2\">Participe en la Fundaci\u00f3n ARRE Ser\u00e1n tu mayor apoyo.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Descubre la inspiradora historia de los Bailey.<\/p>\n","protected":false},"author":28,"featured_media":50027,"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":[96],"tags":[],"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/posts\/50035"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/users\/28"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/comments?post=50035"}],"version-history":[{"count":5,"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/posts\/50035\/revisions"}],"predecessor-version":[{"id":52630,"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/posts\/50035\/revisions\/52630"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/media\/50027"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/media?parent=50035"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/categories?post=50035"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/es\/wp-json\/wp\/v2\/tags?post=50035"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}