{"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":"partagez-votre-histoire-le-voyage-daydans-avec-le-craniopharyngiome","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2024\/12\/11\/share-your-story-aydans-journey-with-craniopharyngioma\/","title":{"rendered":"Le parcours d'Aydan avec le craniopharyngiome"},"content":{"rendered":"

Du diagnostic \u00e0 l'espoir : le courageux parcours d'Aydan, atteint d'un craniopharyngiome<\/h2>\n\n\n\n

En avril 2021, la vie d'Aydan Arguello a chang\u00e9 \u00e0 jamais lorsqu'on lui a diagnostiqu\u00e9 un craniopharyngiome, une tumeur c\u00e9r\u00e9brale rare qui se d\u00e9veloppe pr\u00e8s de l'hypophyse. Il s'ensuivit un incroyable parcours de r\u00e9silience, d'innovation m\u00e9dicale et d'amour in\u00e9branlable de la part de sa famille, qui a d\u00fb faire face aux d\u00e9fis pos\u00e9s par ce diagnostic.<\/p>\n\n\n\n

Aydan, alors tout petit, a commenc\u00e9 \u00e0 montrer des signes de maladie en manifestant une soif inhabituelle et insatiable. Apr\u00e8s un diagnostic de diab\u00e8te insipide sans cause claire, ses parents, Janeisy et Bergman, ont cherch\u00e9 des r\u00e9ponses. Janeisy, infirmi\u00e8re de formation, soup\u00e7onnait que quelque chose de plus profond n'allait pas. En insistant pour faire passer une IRM, elle a d\u00e9couvert une grosse tumeur - d\u00e9j\u00e0 de la taille d'une mandarine - qui affectait les fonctions vitales du cerveau de l'enfant.<\/p>\n\n\n\n

La recherche des soins appropri\u00e9s<\/h3>\n\n\n\n

Les Arguellos ont commenc\u00e9 \u00e0 chercher les meilleurs soins possibles pour Aydan, naviguant dans un labyrinthe d'avis m\u00e9dicaux et d'options de traitement. Dans un premier temps, un neurochirurgien de Miami a drain\u00e9 une partie de la tumeur et Aydan a commenc\u00e9 un traitement hormonal de substitution. Mais la famille savait qu'il ne s'agissait l\u00e0 que d'une solution temporaire.<\/p>\n\n\n\n

Ils ont consult\u00e9 des sp\u00e9cialistes dans tout le pays et ont finalement trouv\u00e9 l'espoir \u00e0 Boston. Le Dr Lissa Baird, codirectrice du Centre des tumeurs c\u00e9r\u00e9brales \u00e0 Dana-Farber\/Boston Children's, a propos\u00e9 une approche logique, fond\u00e9e sur des preuves, qui a trouv\u00e9 un \u00e9cho aupr\u00e8s de la famille.<\/p>\n\n\n\n

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

En juillet 2022, le Dr Baird a retir\u00e9 avec succ\u00e8s la tumeur d'Aydan, offrant \u00e0 la famille un nouveau d\u00e9part. Cependant, des complications sont apparues quelques mois plus tard lorsque le tissu cicatriciel a provoqu\u00e9 une hydroc\u00e9phalie, une accumulation de liquide dans le cerveau qui a entra\u00een\u00e9 de graves maux de t\u00eate et des naus\u00e9es.<\/p>\n\n\n\n

Une course de 1 500 miles pour obtenir de l'aide<\/h3>\n\n\n\n

Lorsque les options locales se sont r\u00e9v\u00e9l\u00e9es insuffisantes, les Arguellos ont pris la d\u00e9cision difficile de retourner \u00e0 Boston. L'\u00e9tat d'Aydan s'aggravant et le temps \u00e9tant compt\u00e9, la famille a pris des mesures extraordinaires pour le faire venir par avion afin qu'il soit soign\u00e9. \u00c0 leur arriv\u00e9e \u00e0 l'h\u00f4pital pour enfants de Boston, ils ont trouv\u00e9 une \u00e9quipe d\u00e9vou\u00e9e pr\u00eate \u00e0 pratiquer une intervention chirurgicale peu invasive pour soulager les sympt\u00f4mes d'Aydan.<\/p>\n\n\n\n

Construire une nouvelle vie<\/h3>\n\n\n\n

Consciente de la n\u00e9cessit\u00e9 de soins continus, la famille s'est install\u00e9e dans le Massachusetts. Pendant plus d'un an, Aydan a fait l'objet d'une surveillance \u00e9troite et de traitements suppl\u00e9mentaires. Bien que son parcours ait \u00e9t\u00e9 loin d'\u00eatre facile, ses parents reconnaissent que la collaboration et la compassion de l'\u00e9quipe du Boston Children's leur ont donn\u00e9 de l'espoir.<\/p>\n\n\n\n

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

Aujourd'hui \u00e2g\u00e9 de 4 ans, Aydan s'\u00e9panouit. Sa personnalit\u00e9 impertinente et ses r\u00eaves de devenir m\u00e9decin ou infirmier inspirent tous ceux qu'il rencontre. Gr\u00e2ce \u00e0 son traitement, il contribue \u00e9galement \u00e0 la recherche sur les craniopharyngiomes, aidant ainsi les futurs patients comme lui.<\/p>\n\n\n\n

Perspectives d'avenir<\/h3>\n\n\n\n

Le chemin \u00e0 parcourir est incertain, mais les Arguellos prennent les choses au jour le jour. Aydan continue d'\u00eatre suivi r\u00e9guli\u00e8rement et ses parents restent optimistes. <\/p>\n\n\n\n

L'histoire d'Aydan t\u00e9moigne de la force des familles confront\u00e9es aux craniopharyngiomes, du d\u00e9vouement des professionnels de la sant\u00e9 et de l'importance de la pers\u00e9v\u00e9rance dans la recherche de r\u00e9ponses.<\/p>\n\n\n\n

Si vous ou l'un de vos proches avez \u00e9t\u00e9 affect\u00e9 par une tumeur c\u00e9r\u00e9brale rare, la Fondation Raymond A. Wood est l\u00e0 pour vous soutenir. Ensemble, nous pouvons faire en sorte qu'aucune famille ne se sente seule dans son parcours.<\/p>\n\n\n\nSoutenir notre travail<\/a>\n\n\n\n

<\/div>\n\n\n\nPartagez votre histoire<\/a>\n\n\n\n
\n\n\n\n

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

Du diagnostic \u00e0 l'espoir : le parcours courageux d'Aydan, atteint d'un craniopharyngiome En avril 2021, la vie d'Aydan Arguello ... Lire plus<\/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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