{"id":18271,"date":"2024-08-26T17:53:22","date_gmt":"2024-08-26T17:53:22","guid":{"rendered":"https:\/\/lpfch.org\/?p=18271"},"modified":"2025-05-22T21:18:59","modified_gmt":"2025-05-22T21:18:59","slug":"scooby-doo-fan-donut-snacker-hunter-syndrome-ambassador","status":"publish","type":"post","link":"https:\/\/lpfch.org\/es\/impact-stories\/scooby-doo-fan-donut-snacker-hunter-syndrome-ambassador\/","title":{"rendered":"Fan de Scooby-Doo, amante de las donas y embajador del s\u00edndrome de Hunter"},"content":{"rendered":"<p><span data-contrast=\"auto\">A Aiden, de doce a\u00f1os, le encanta el f\u00fatbol, los paseos nocturnos, nadar, ver pel\u00edculas y comer donas. Disfruta de la escuela y es el centro del universo para su mam\u00e1, Danae. Aiden tambi\u00e9n ha pasado m\u00e1s horas de las que puede contar en nuestro hospital.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Cuando Aiden era un beb\u00e9, le diagnosticaron el s\u00edndrome de Hunter, una rara enfermedad gen\u00e9tica en la que su cuerpo no puede descomponer las mol\u00e9culas de az\u00facar. Con el tiempo, los az\u00facares se acumulan en su cuerpo y afectan muchos aspectos de su vida. Aiden, que antes era un ni\u00f1o activo y hablador, hoy tiene movilidad limitada y usa un parlante para comunicarse con sus amigos y familiares.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Actualmente no existe cura para el s\u00edndrome de Hunter. Para ayudar a frenar la progresi\u00f3n de su enfermedad, Aiden y Danae pasan seis horas semanales en nuestro centro de infusi\u00f3n. Aiden recibe una dosis de enzimas, un tratamiento desarrollado mediante investigaciones realizadas en la Facultad de Medicina de Stanford. <\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Aunque la condici\u00f3n de Aiden es rara, no es el primero en su familia que la padece. Lamentablemente, su t\u00edo, Angel, falleci\u00f3 a causa del s\u00edndrome de Hunter a los 17 a\u00f1os. El legado de Angel es que, durante su vida, particip\u00f3 en un ensayo cl\u00ednico en el Packard Children&#039;s Hospital que ayud\u00f3 a desarrollar el tratamiento que Aiden recibe hoy. Danae y Aiden esperan que la investigaci\u00f3n en curso les brinde m\u00e1s oportunidades en el futuro para seguir corriendo en la playa bajo el c\u00e1lido sol y crear muchos m\u00e1s recuerdos preciados.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Su apoyo al Lucile Packard Children&#039;s Hospital Stanford y a los programas de salud infantil de la Facultad de Medicina de Stanford garantiza que ni\u00f1os como Aiden reciban atenci\u00f3n extraordinaria hoy y que la investigaci\u00f3n sobre sus afecciones avance hacia mejores tratamientos ma\u00f1ana.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">\u201cMe gustar\u00eda agradecer a todos los investigadores y donantes por todo el arduo trabajo que est\u00e1n haciendo para ayudar a mantener encendida la llama de la esperanza para familias como la m\u00eda\u201d, dice Danae.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>A Aiden, de doce a\u00f1os, le encanta el f\u00fatbol, los paseos nocturnos, nadar, ver pel\u00edculas y comer donas. Disfruta de la escuela y es el centro del universo para\u2026<\/p>","protected":false},"author":7,"featured_media":18281,"comment_status":"open","ping_status":"open","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":[23],"class_list":["post-18271","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-summer-scamper-heroes","engagement_type-summer-scamper"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.2 (Yoast SEO v27.2) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Scooby-Doo Fan, Donut Snacker, and Hunter Syndrome Ambassador - Lucile Packard Foundation for Children&#039;s Health<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/lpfch.org\/es\/impact-stories\/scooby-doo-fan-donut-snacker-hunter-syndrome-ambassador\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Scooby-Doo Fan, Donut Snacker, and Hunter Syndrome Ambassador\" \/>\n<meta property=\"og:description\" content=\"Twelve-year-old Aiden loves soccer, evening walks, swimming, watching movies, and eating donuts. 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