{"id":10481,"date":"2024-12-11T14:44:30","date_gmt":"2024-12-11T14:44:30","guid":{"rendered":"https:\/\/www.rawoodfoundation.org\/?p=10481"},"modified":"2024-12-20T15:17:55","modified_gmt":"2024-12-20T15:17:55","slug":"comparte-tu-historia-el-viaje-de-aydans-con-craneofaringioma","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/es\/2024\/12\/11\/share-your-story-aydans-journey-with-craniopharyngioma\/","title":{"rendered":"El viaje de Aydan con craneofaringioma"},"content":{"rendered":"

Del diagn\u00f3stico a la esperanza: el valiente viaje de Aydan con craneofaringioma<\/h2>\n\n\n\n

En abril de 2021, la vida de Aydan Arguello cambi\u00f3 para siempre cuando le diagnosticaron un craneofaringioma, un tumor cerebral poco frecuente que crece cerca de la hip\u00f3fisis. Lo que sigui\u00f3 fue un incre\u00edble viaje de resiliencia, innovaci\u00f3n m\u00e9dica y amor inquebrantable de su familia mientras superaban los retos de este diagn\u00f3stico.<\/p>\n\n\n\n

Aydan, que entonces era un ni\u00f1o peque\u00f1o, empez\u00f3 a mostrar signos de enfermedad con una sed insaciable y poco habitual. Tras un diagn\u00f3stico de diabetes ins\u00edpida sin una causa clara, sus padres, Janeisy y Bergman, buscaron respuestas. Janeisy, enfermera de formaci\u00f3n, sospechaba que ocurr\u00eda algo m\u00e1s profundo. Su insistencia en que le hicieran una resonancia magn\u00e9tica permiti\u00f3 descubrir un gran tumor -ya del tama\u00f1o de una mandarina- que afectaba a funciones vitales de su cerebro.<\/p>\n\n\n\n

La b\u00fasqueda de los cuidados adecuados<\/h3>\n\n\n\n

Los Arguello empezaron a buscar la mejor atenci\u00f3n posible para Aydan, navegando por un laberinto de opiniones m\u00e9dicas y opciones de tratamiento. Al principio, un neurocirujano de Miami dren\u00f3 parte del tumor y Aydan empez\u00f3 una terapia hormonal sustitutiva. Pero la familia sab\u00eda que s\u00f3lo era una soluci\u00f3n temporal.<\/p>\n\n\n\n

Consultaron a especialistas de todo el pa\u00eds y finalmente encontraron esperanza en Boston. La Dra. Lissa Baird, codirectora del Centro de Tumores Cerebrales de Dana-Farber\/Boston Children's, ofreci\u00f3 un enfoque l\u00f3gico y basado en pruebas que reson\u00f3 en la familia.<\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

En julio de 2022, el Dr. Baird extirp\u00f3 con \u00e9xito el tumor de Aydan, dando a la familia un nuevo comienzo. Sin embargo, unos meses m\u00e1s tarde surgieron complicaciones cuando el tejido cicatricial provoc\u00f3 hidrocefalia, una acumulaci\u00f3n de l\u00edquido en el cerebro que provoc\u00f3 fuertes dolores de cabeza y n\u00e1useas.<\/p>\n\n\n\n

Una carrera de 1.500 millas en busca de ayuda<\/h3>\n\n\n\n

Cuando las opciones locales se quedaron cortas, los Arguello tomaron la dif\u00edcil decisi\u00f3n de volver a Boston. El estado de Aydan empeoraba y el tiempo se agotaba, por lo que la familia tom\u00f3 medidas extraordinarias para trasladarlo en avi\u00f3n para recibir tratamiento. Llegaron al Boston Children's Hospital y se encontraron con un equipo especializado listo para realizar una cirug\u00eda m\u00ednimamente invasiva para aliviar los s\u00edntomas de Aydan.<\/p>\n\n\n\n

Construir una nueva vida<\/h3>\n\n\n\n

Consciente de la necesidad de cuidados continuos, la familia se traslad\u00f3 a Massachusetts. Durante m\u00e1s de un a\u00f1o, Aydan recibi\u00f3 un seguimiento minucioso y tratamientos adicionales. Aunque su camino no ha sido nada f\u00e1cil, sus padres agradecen al equipo colaborador y compasivo del Boston Children's por darles esperanzas.<\/p>\n\n\n\n

\"\"<\/figure>\n\n\n\n

A sus 4 a\u00f1os, Aydan est\u00e1 prosperando. Su personalidad atrevida y sus sue\u00f1os de convertirse en m\u00e9dico o enfermero inspiran a todos los que conoce. Gracias a su tratamiento, tambi\u00e9n contribuye a la investigaci\u00f3n sobre craneofaringiomas, ayudando a futuros pacientes como \u00e9l.<\/p>\n\n\n\n

De cara al futuro<\/h3>\n\n\n\n

El camino por delante es incierto, pero los Arguello se toman las cosas d\u00eda a d\u00eda. Aydan sigue recibiendo atenci\u00f3n m\u00e9dica peri\u00f3dica y sus padres siguen siendo optimistas. <\/p>\n\n\n\n

La historia de Aydan es un testimonio de la fortaleza de las familias que se enfrentan a craneofaringiomas, de la dedicaci\u00f3n de los profesionales m\u00e9dicos y de la importancia de persistir en la b\u00fasqueda de respuestas.<\/p>\n\n\n\n

Si usted o un ser querido se ha visto afectado por un tumor cerebral raro, la Fundaci\u00f3n Raymond A. Wood est\u00e1 aqu\u00ed para apoyarle. Juntos, podemos asegurarnos de que ninguna familia se sienta sola en su viaje.<\/p>\n\n\n\nApoye nuestro trabajo<\/a>\n\n\n\n

<\/div>\n\n\n\nComparte tu historia<\/a>\n\n\n\n
\n\n\n\n

<\/p>","protected":false},"excerpt":{"rendered":"

Del diagn\u00f3stico a la esperanza: el valiente viaje de Aydan con craneofaringioma En abril de 2021, la vida de Aydan Arguello ... Seguir leyendo<\/a><\/p>","protected":false},"author":4,"featured_media":10483,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[35,47,43],"tags":[34,60,61,51,50],"class_list":["post-10481","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-craniopharyngioma","category-di","category-patient-stories","tag-brain-tumor","tag-craniopharyngioma","tag-diabetes-insipidus","tag-share-your-story","tag-survivor","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"\nAydan's Journey with Craniopharyngioma - Raymond A. 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