{"id":8642,"date":"2016-01-26T21:46:04","date_gmt":"2016-01-26T21:46:04","guid":{"rendered":"https:\/\/lpfch.org\/daniels-story\/"},"modified":"2024-01-31T23:36:34","modified_gmt":"2024-01-31T23:36:34","slug":"daniels-story","status":"publish","type":"post","link":"https:\/\/lpfch.org\/es\/impact-stories\/daniels-story\/","title":{"rendered":"Es una bomba de relojer\u00eda. Tenemos que vivir nuestra vida diaria sabiendo que todo podr\u00eda salir mal en cualquier momento."},"content":{"rendered":"<h2>Conozca a Daniel de Ontario, CA.<\/h2>\n<p>Daniel vive con neurofibromatosis.<\/p>\n<p><img decoding=\"async\" src=\"https:\/\/lpfch.org\/wp-content\/uploads\/2024\/01\/_df38246.jpg\" alt=\"Daniel Iniguez\" \/><\/p>\n<p>A las 5:30 a. m., Manuel \u00cd\u00f1iguez despierta a Daniel, el menor de sus cuatro hijos. &quot;\u00bfC\u00f3mo tienes las piernas?&quot;, pregunta Manuel. &quot;No quer\u00edan despertar&quot;, responde Daniel. \u00daltimamente, se le han endurecido las pantorrillas, lo que le dificulta subir y bajar las escaleras de su casa de dos pisos. Usa aparatos ortop\u00e9dicos para estirar los m\u00fasculos. (Foto: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df38296.jpg\" alt=\"Daniel Iniguez\" \/><\/p>\n<p>Manuel le da a Daniel sus medicamentos en su casa en Ontario, California. La neurofibromatosis de Daniel ha provocado el desarrollo de tumores en su cerebro, est\u00f3mago y columna vertebral. Estos pueden volverse malignos en cualquier momento, por lo que Manuel y su esposa, Dana, revisan el cuerpo de Daniel todas las noches para detectar manchas o bultos en la piel. &quot;Es una bomba de relojer\u00eda&quot;, dice Manuel. &quot;Tenemos que vivir nuestra vida diaria sabiendo que todo puede salir mal en cualquier momento&quot;. (Foto: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df38357.jpg\" alt=\"Daniel Iniguez\" \/><\/p>\n<p>Daniel usa un nebulizador todas las ma\u00f1anas para inhalar medicamentos. (Foto: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df38393.jpg\" alt=\"Daniel Iniguez\" \/><\/p>\n<p>A las 6:30 a. m., llega el autob\u00fas de Daniel para llevarlo a la escuela. (Foto: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df38402.jpg\" alt=\"Daniel Iniguez\" \/><\/p>\n<p>La madre de Daniel, Dana, aprendi\u00f3 tanto sobre el trastorno gen\u00e9tico de Daniel y los cuidados necesarios para controlarlo que fund\u00f3 la Fundaci\u00f3n Familiar de Neurofibromatosis para ayudar a otras familias a encontrar respuestas tambi\u00e9n. (Foto: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df38502.jpg\" alt=\"Daniel Iniguez\" \/><\/p>\n<p>Daniel asiste a una clase para ni\u00f1os con necesidades especiales en Montclair, California. La lecci\u00f3n de hoy trata sobre ping\u00fcinos. &quot;\u00bfAlguien pens\u00f3 m\u00e1s en los ping\u00fcinos durante el almuerzo?&quot;, pregunta su maestra. &quot;\u00a1No, est\u00e1bamos demasiado ocupados pensando en el almuerzo!&quot;, bromea Daniel. (Foto: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df38510.jpg\" alt=\"Daniel Iniguez\" \/><\/p>\n<p>Dana llega a la escuela a recoger a Daniel para una cita. Todas las citas de Daniel est\u00e1n a entre 30 y 60 minutos de la escuela y de su casa. Y cada tres meses, \u00e9l y uno de sus padres viajan a Maryland para participar en un estudio en los Institutos Nacionales de la Salud. (Foto: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df38560.jpg\" alt=\"Daniel Iniguez\" \/><\/p>\n<p>Mientras espera una cita en San Bernardino, California, Dana trabaja con el papeleo de Daniel mientras Manuel lo ayuda con sus tareas. Dana y Manuel trabajan desde casa para poder encargarse del cuidado de Daniel. Para que ambos padres puedan asistir a la cita de hoy, la madre de Dana ha aceptado recoger a los otros tres hijos de los \u00cd\u00f1iguez de la escuela. (Foto: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/_df38608_crop.jpg\" alt=\"Daniel Iniguez\" \/><\/p>\n<p>Daniel saluda a una enfermera en una cl\u00ednica oncol\u00f3gica de Loma Linda, San Bernardino. La enfermera hab\u00eda limpiado el puerto de Daniel, que le colocaron por si necesitaba quimioterapia. Un puerto es un peque\u00f1o dispositivo que se coloca debajo de la piel y facilita la inyecci\u00f3n de medicamentos o la extracci\u00f3n de sangre. (Foto: Deanne Fitzmaurice)<\/p>\n<p>&nbsp;<\/p>\n<h2>Mapa de cuidados de Daniel<\/h2>\n<p><img decoding=\"async\" src=\"\/wp-content\/uploads\/wpallimport\/files\/iniguez-care-map.jpg\" alt=\"\" \/><\/p>\n<p>El \u201cmapa de atenci\u00f3n\u201d de Daniel, que ilustra la complicada red de atenci\u00f3n y cobertura m\u00e9dica, as\u00ed como los servicios educativos y de apoyo necesarios para los ni\u00f1os con complejidad m\u00e9dica y sus familias.<\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>Les presentamos a Daniel, de Ontario, Canad\u00e1. Daniel vive con neurofibromatosis. A las 5:30 a. m., Manuel \u00cd\u00f1iguez despierta a Daniel, el menor de sus cuatro hijos. &quot;\u00bfC\u00f3mo\u2026<\/p>","protected":false},"author":17,"featured_media":10607,"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":[20],"class_list":["post-8642","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-cyshcn-stories"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.3 (Yoast SEO v27.3) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>&quot;It\u2019s a ticking time bomb. 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