{"id":41,"date":"2020-01-15T00:38:18","date_gmt":"2020-01-15T00:38:18","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2020\/01\/15\/2020-1-14-meet-connor-donahue-latest-beneficiary\/"},"modified":"2023-08-01T19:30:19","modified_gmt":"2023-08-01T19:30:19","slug":"2020-1-14-conocer-a-connor-donahue-ultimo-beneficiario","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2020\/01\/15\/2020-1-14-meet-connor-donahue-latest-beneficiary\/","title":{"rendered":"Conozca a Connor Donahue, \u00faltimo beneficiario"},"content":{"rendered":"<div\n        class=\"image-block-outer-wrapper          layout-caption-below          design-layout-inline          combination-animation-none          individual-animation-none          individual-text-animation-none\"\n        data-test=\"image-block-inline-outer-wrapper\"\n    ><\/p>\n<figure\n            class=\"sqs-block-image-figure              intrinsic\"\n            style=\"max-width:740px;\"\n        ><\/p>\n<div\n\n\n              class=\"image-block-wrapper\"\n              data-animation-role=\"image\"\n\n\n\n          ><\/p>\n<div class=\"sqs-image-shape-container-element              has-aspect-ratio\" style=\"                position: relative;                  padding-bottom:93.24324035644531%;                overflow: hidden;-webkit-mask-image: -webkit-radial-gradient(white, black);              \"\n              ><\/p>\n<p>                  <noscript><img decoding=\"async\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1579048730498-M7VPVMY2ZUB8J1QP9USP\/connor.jpg\" alt=\"CONNOR (DERECHA) ES EL \u00daLTIMO RECEPTOR DE UN ANALIZADOR DE SANGRE PORT\u00c1TIL PARA AYUDAR A CONTROLAR LA DIABETES INS\u00cdPIDA COMPLICADA A CONSECUENCIA DE UN HAMARTOMA HIPOTAL\u00c1MICO.\" \/><\/noscript><img decoding=\"async\" class=\"thumb-image\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1579048730498-M7VPVMY2ZUB8J1QP9USP\/connor.jpg\" data-image=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1579048730498-M7VPVMY2ZUB8J1QP9USP\/connor.jpg\" data-image-dimensions=\"740x690\" data-image-focal-point=\"0.5,0.5\" alt=\"CONNOR (DERECHA) ES EL \u00daLTIMO RECEPTOR DE UN ANALIZADOR DE SANGRE PORT\u00c1TIL PARA AYUDAR A CONTROLAR LA DIABETES INS\u00cdPIDA COMPLICADA A CONSECUENCIA DE UN HAMARTOMA HIPOTAL\u00c1MICO.\" data-load=\"false\" data-image-id=\"5e1e5f18c7a87d3abb4c8894\" data-type=\"image\" \/><\/p><\/div>\n<\/p><\/div><figcaption class=\"image-caption-wrapper\">\n<div class=\"image-caption\">\n<p class=\"\">CONNOR (DERECHA) ES EL \u00daLTIMO RECEPTOR DE UN ANALIZADOR DE SANGRE PORT\u00c1TIL PARA AYUDAR A CONTROLAR LA DIABETES INS\u00cdPIDA COMPLICADA A CONSECUENCIA DE UN HAMARTOMA HIPOTAL\u00c1MICO.<\/p>\n<\/div>\n<\/figcaption><\/figure>\n<\/p><\/div>\n<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space:pre-wrap;\">Connor, que ahora tiene 17 a\u00f1os, naci\u00f3 con un tipo raro de tumor cerebral llamado <a href=\"https:\/\/www.chop.edu\/conditions-diseases\/hypothalamic-hamartoma\">hamartoma hipotal\u00e1mico (HH)<\/a> .  Connor sufri\u00f3 ataques gel\u00e1sticos (un s\u00edntoma de HH) desde su nacimiento. Los ataques gel\u00e1sticos son raros y consisten en episodios de risa nerviosa sin desencadenante aparente. Los ataques nunca se diagnosticaron hasta que empez\u00f3 a tener ataques parciales complejos. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Tras ser ingresado en el hospital a los siete a\u00f1os, descubrieron que Connor ten\u00eda un gran tumor cerebral en lo m\u00e1s profundo del cerebro. Les dijeron que era inoperable. Despu\u00e9s de realizarle un electroencefalograma a Connor, descubrieron que ten\u00eda convulsiones continuas incluso cuando no presentaba ning\u00fan tipo de actividad convulsiva que se pudiera ver.  <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Seg\u00fan Lisa, la madre de Connor, \"no nos dieron mucha informaci\u00f3n, no parec\u00eda haber mucho \u00e9xito con la medicaci\u00f3n y la cirug\u00eda nos dijeron que era demasiado arriesgada\".<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Tras el alta, la familia busc\u00f3 en Internet algo de informaci\u00f3n sobre esta terrible enfermedad y encontr\u00f3 una esperanza para el hamartoma hipotal\u00e1mico. Efectivamente, hab\u00eda un m\u00e9dico en Estados Unidos que ten\u00eda experiencia en la extirpaci\u00f3n de este tipo de tumor cerebral poco frecuente. Despu\u00e9s de muchos tr\u00e1mites burocr\u00e1ticos por parte del seguro, la familia viaj\u00f3 de Nueva Jersey a Arizona para entrevistarse con el Dr. Rekate en el <a href=\"https:\/\/www.barrowneuro.org\/\">Instituto Neurol\u00f3gico Barrow<\/a> en Phoenix, Arizona. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">El Dr. Rekate realiz\u00f3 una intervenci\u00f3n quir\u00fargica de ocho horas en la que extirp\u00f3 aproximadamente el 80% del tumor. Connor estuvo en el hospital durante tres semanas en Arizona recuper\u00e1ndose y pas\u00f3 la cuarta semana en Arizona como paciente ambulatorio. \u00a1Connor fue dado de alta para volver a casa a Nueva Jersey libre de convulsiones! <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Parec\u00eda como si nos hubieran devuelto a nuestro hijo\", dice Lisa. \"Segu\u00eda teniendo retraso en el desarrollo, pero la mirada fija, la ira y las convulsiones asociadas al HH parec\u00edan haber desaparecido\".&nbsp; <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Se les inform\u00f3 de que <a href=\"https:\/\/www.mayoclinic.org\/diseases-conditions\/diabetes-insipidus\/symptoms-causes\/syc-20351269\">Diabetes ins\u00edpida (DI)<\/a> era una posibilidad, pero no mostr\u00f3 ning\u00fan signo durante las cuatro semanas posteriores a la operaci\u00f3n y todo el mundo estaba bastante seguro de que no ten\u00eda que preocuparse por la DI. Unos diez d\u00edas despu\u00e9s de llegar a casa, Connor mostr\u00f3 signos de DI y fue ingresado en el hospital con 179 de sodio.  El rango normal de sodio es de 135 a 145. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Connor estuvo muy, muy enfermo, y permaneci\u00f3 en la UCIP durante 3 semanas, y una semana en la planta de pediatr\u00eda.  La DI de Connor ha sido muy dif\u00edcil de manejar. Su sodio es alto cuando cl\u00ednicamente deber\u00eda ser bajo, el sodio es bajo cuando deber\u00eda ser alto, los endocrin\u00f3logos del Hospital Infantil de Filadelfia no saben por qu\u00e9 su DI se presenta de esta manera. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Connor no tiene la sed intacta, por lo que sus cuidadores controlan todas sus entradas y salidas de l\u00edquidos. Incluso midiendo sus fluidos, ha sido hospitalizado muchas veces con su sodio variando de 126 a 176. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">\"La posibilidad de utilizar un analizador de sangre port\u00e1til en casa para controlar el sodio cuando aparecen los s\u00edntomas ser\u00eda de gran ayuda para controlar su DI y, con un poco de suerte, le mantendr\u00eda sano y fuera del hospital\", dijo Lisa. \"Gracias por escuchar su historia y por ayudarnos a obtener esta m\u00e1quina\".<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Connor fue el beneficiario del analizador de sangre port\u00e1til gracias a tu apoyo el Martes de Acci\u00f3n Solidaria. Considera la posibilidad de hacer una donaci\u00f3n mensual para seguir ayudando a ni\u00f1os como Connor.<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p class=\"\" style=\"white-space:pre-wrap;\">Connor, que ahora tiene 17 a\u00f1os, naci\u00f3 con un tipo raro de tumor cerebral llamado <a href=\"https:\/\/www.chop.edu\/conditions-diseases\/hypothalamic-hamartoma\">hamartoma hipotal\u00e1mico (HH)<\/a> .  Connor sufri\u00f3 ataques gel\u00e1sticos (un s\u00edntoma de HH) desde su nacimiento. Los ataques gel\u00e1sticos son raros y consisten en episodios de risa nerviosa sin desencadenante aparente. Los ataques nunca se diagnosticaron hasta que empez\u00f3 a tener ataques parciales complejos. <\/p>","protected":false},"author":6,"featured_media":6693,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[21,1],"tags":[],"class_list":["post-41","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blood-analyzer-recipient","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Meet Connor Donahue, Latest Beneficiary - Raymond A. 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