{"id":311,"date":"2025-01-22T15:57:04","date_gmt":"2025-01-22T15:57:04","guid":{"rendered":"https:\/\/cape.childrenshospital.org\/?page_id=311"},"modified":"2026-02-18T19:13:32","modified_gmt":"2026-02-18T19:13:32","slug":"patient-stories","status":"publish","type":"page","link":"https:\/\/cape.childrenshospital.org\/es\/stories\/patient-stories\/","title":{"rendered":"Historias de pacientes"},"content":{"rendered":"<h2 class=\"wp-block-heading\">Conoce a Jonathan<\/h2>\n\n\n\n<div class=\"wp-block-media-text is-stacked-on-mobile\" style=\"grid-template-columns:35% auto\"><figure class=\"wp-block-media-text__media\"><img loading=\"lazy\" decoding=\"async\" width=\"293\" height=\"189\" src=\"https:\/\/cape.childrenshospital.org\/wp-content\/uploads\/2024\/07\/jonathan.jpg\" alt=\"teen boy in a wheelchair\" class=\"wp-image-27 size-full\"\/><\/figure><div class=\"wp-block-media-text__content\">\n<p class=\"wp-block-paragraph\">Cuando me diagnosticaron atrofia muscular espinal (AME) de ni\u00f1o, mi mundo entero cambi\u00f3. Mi familia y yo tuvimos que aprender muchas cosas nuevas, como conseguir una silla de ruedas, hacer nuestra casa accesible y aprender a cuidar mi salud. Fue mucho para procesar y, a veces, se sinti\u00f3 muy dif\u00edcil y triste. A menudo me sent\u00eda ansioso y triste, pero mis padres siempre estuvieron ah\u00ed para m\u00ed. Trabajaron duro para asegurarse de que mi vida fuera lo m\u00e1s normal y divertida posible, a pesar de que todo se sent\u00eda diferente.<\/p>\n<\/div><\/div>\n\n\n\n<details class=\"wp-block-details is-layout-flow wp-block-details-is-layout-flow\"><summary>Leer m\u00e1s<\/summary>\n<p class=\"wp-block-paragraph\">La escuela fue dura para m\u00ed. No se trataba solo de los desaf\u00edos f\u00edsicos de usar una silla de ruedas, sino tambi\u00e9n de sentir que no encajaba con los dem\u00e1s ni\u00f1os. Amaba a mis amigos; hac\u00edan todo lo posible para incluirme en todo. Aun as\u00ed, era dif\u00edcil verlos hacer cosas que yo no pod\u00eda, como practicar deportes. En lugar de centrarme en lo que no pod\u00eda hacer, decid\u00ed centrarme en lo que s\u00ed pod\u00eda hacer. \u00a1Me encantaba aprender! Encontr\u00e9 alegr\u00eda en leer libros y explorar computadoras. Fue entonces cuando descubr\u00ed la codificaci\u00f3n y la rob\u00f3tica, lo que me inspir\u00f3 a trabajar para tener una carrera en tecnolog\u00eda.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Mi familia siempre ha sido mi mayor apoyo. Encontramos la felicidad en las cosas sencillas, como jugar juegos de mesa en familia, ver pel\u00edculas juntos o simplemente re\u00edrnos de chistes tontos. Mi hermana ha sido especialmente importante en mi vida. Ella siempre sabe c\u00f3mo hacerme re\u00edr y nunca me trata de manera diferente por mi condici\u00f3n. Es mi mejor amiga y mi mayor animadora.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Vivir con AME me ha ense\u00f1ado mucho. Me ha demostrado lo fuerte que soy y lo importante que es tener gente que te quiera y te apoye. Tambi\u00e9n he aprendido lo importante que es cuidar mi salud mental. Est\u00e1 bien sentirse triste o frustrado a veces, pero tambi\u00e9n es importante hablar con alguien al respecto, ya sea un familiar, un amigo o un consejero. Cuidar tu mente es tan importante como cuidar tu cuerpo. Cuando empec\u00e9 a prestar m\u00e1s atenci\u00f3n a c\u00f3mo me sent\u00eda emocionalmente, me sent\u00ed m\u00e1s fuerte y mejor preparado para afrontar los desaf\u00edos.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Espero que al compartir mi historia, pueda ofrecer algo de esperanza a cualquiera que est\u00e9 pasando por algo similar. No importa los desaf\u00edos que enfrentes, no est\u00e1s solo. Hay tantas cosas incre\u00edbles que puedes hacer y personas a tu alrededor que se preocupan por ti. As\u00ed que, sigue adelante, encuentra las cosas que te hacen feliz y recuerda apoyarte en las personas que m\u00e1s te quieren.<\/p>\n<\/details>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<h2 class=\"wp-block-heading\">Conoce a Margaret<\/h2>\n\n\n\n<div class=\"wp-block-media-text is-stacked-on-mobile\" style=\"grid-template-columns:35% auto\"><figure class=\"wp-block-media-text__media\"><img loading=\"lazy\" decoding=\"async\" width=\"293\" height=\"189\" src=\"https:\/\/cape.childrenshospital.org\/wp-content\/uploads\/2026\/02\/Cape-Margaret.jpeg\" alt=\"Little girl holding hands with someone sitting in bed\" class=\"wp-image-705 size-full\" srcset=\"https:\/\/cape.childrenshospital.org\/wp-content\/uploads\/2026\/02\/Cape-Margaret.jpeg 293w, https:\/\/cape.childrenshospital.org\/wp-content\/uploads\/2026\/02\/Cape-Margaret-130x84.jpeg 130w\" sizes=\"auto, (max-width: 293px) 100vw, 293px\" \/><\/figure><div class=\"wp-block-media-text__content\">\n<p class=\"wp-block-paragraph\">Cuando ten\u00eda siete a\u00f1os, el diagn\u00f3stico de fibrosis qu\u00edstica (FQ) se sinti\u00f3 como si de repente me hubiera atrapado una tormenta. Un minuto, era solo un ni\u00f1o al que le encantaba correr y jugar afuera, y al siguiente, estaba aprendiendo a vivir con hospitalizaciones, tratamientos de respiraci\u00f3n, inhaladores y mucha medicaci\u00f3n. Fue como si todo hubiera cambiado de la noche a la ma\u00f1ana. Mis padres tuvieron que convertirse r\u00e1pidamente en expertos en FQ, investigando nuevos tratamientos, dietas especiales y formas de controlar mi salud. Sentimos que est\u00e1bamos en un laberinto sin una salida clara.<\/p>\n<\/div><\/div>\n\n\n\n<details class=\"wp-block-details is-layout-flow wp-block-details-is-layout-flow\"><summary>Leer m\u00e1s<\/summary>\n<p class=\"wp-block-paragraph\">Mi familia ha sido incre\u00edble durante todo esto. Mi mam\u00e1 siempre supo c\u00f3mo hacer los d\u00edas dif\u00edciles un poco m\u00e1s alegres. Cuando no pod\u00eda salir a jugar, ella inventaba juegos divertidos para interiores para mantenerme ocupada. Mi pap\u00e1 se convirti\u00f3 en un gran cocinero, preparando comidas deliciosas que se adaptaban a mi dieta especial. \u00bfY mi hermanita? Ella fue mi fuente constante de risas, inventando juegos tontos y chistes que me hac\u00edan sonre\u00edr incluso en mis d\u00edas m\u00e1s duros.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">La escuela no siempre fue f\u00e1cil. Algunos compa\u00f1eros entend\u00edan mis frecuentes ausencias y la tos que ven\u00eda con la fibrosis qu\u00edstica, pero otros no siempre lo captaban. Aun as\u00ed, encontr\u00e9 un grupo de amigos en el club de fotograf\u00eda que me ve\u00edan por quien realmente era: una persona creativa a la que le encantaba tomar fotos. Con su aliento, particip\u00e9 en concursos de fotograf\u00eda \u00a1e incluso gan\u00e9 algunos! Equilibrar mi salud y mi pasi\u00f3n por la fotograf\u00eda no siempre fue f\u00e1cil, pero aprend\u00ed a hacerlo funcionar.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Vivir con fibrosis qu\u00edstica (FQ) me ha ense\u00f1ado que la resiliencia y la creatividad pueden ayudarte a encontrar la alegr\u00eda, incluso en tiempos dif\u00edciles. Est\u00e1 bien tener d\u00edas malos, pero no dejes que te impidan encontrar tu pasi\u00f3n. Tambi\u00e9n es muy importante cuidar tu salud mental. Algunos d\u00edas, puede parecer que todo es demasiado para manejar, pero acercarte a amigos, familiares o incluso a un consejero puede ayudarte a sentirte menos solo. Hablar sobre tus sentimientos y encontrar formas saludables de afrontarlos es una parte importante para mantenerte fuerte, tanto mental como f\u00edsicamente.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Espero que mi historia pueda dar aliento a cualquiera que est\u00e9 pasando por algo similar. Tu condici\u00f3n no te define. Hay un mundo entero lleno de oportunidades esper\u00e1ndote. As\u00ed que, sigue adelante, encuentra lo que te hace feliz y ap\u00f3yate siempre en las personas que se preocupan por ti.<\/p>\n<\/details>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>Conoce a Jonathan Cuando me diagnosticaron atrofia muscular espinal (AME) de ni\u00f1o, mi mundo entero cambi\u00f3. Mi familia<a class=\"excerpt-read-more\" href=\"https:\/\/cape.childrenshospital.org\/es\/stories\/patient-stories\/\"><b> \u2026Leer m\u00e1s<\/b><\/a><\/p>","protected":false},"author":4,"featured_media":0,"parent":162,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-311","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Patient Stories - CAPE<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/cape.childrenshospital.org\/es\/stories\/patient-stories\/\" \/>\n<meta property=\"og:locale\" content=\"es_MX\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Patient Stories - CAPE\" \/>\n<meta property=\"og:description\" content=\"Meet Jonathan When I was diagnosed with spinal muscular atrophy (SMA) as a kid, my whole world changed. 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