{"id":147,"date":"2022-11-14T16:37:00","date_gmt":"2022-11-14T16:37:00","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2022\/11\/14\/2022-11-10-meet-bostyn-latest-handheld-blood-analyzer-recipient\/"},"modified":"2023-08-01T19:07:23","modified_gmt":"2023-08-01T19:07:23","slug":"2022-11-10-rencontrer-le-dernier-beneficiaire-dun-analyseur-de-sang-portable-bostyn","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2022\/11\/14\/2022-11-10-meet-bostyn-latest-handheld-blood-analyzer-recipient\/","title":{"rendered":"Rencontre avec Bostyn, le dernier b\u00e9n\u00e9ficiaire d'un analyseur de sang portable"},"content":{"rendered":"<div\n        class=\"image-block-outer-wrapper          layout-caption-below          design-layout-inline          combination-animation-none          individual-animation-none          individual-text-animation-none\"\n        data-test=\"image-block-inline-outer-wrapper\"\n    ><\/p>\n<figure\n            class=\"sqs-block-image-figure              intrinsic\"\n            style=\"max-width:3024px;\"\n        ><\/p>\n<div\n\n\n              class=\"image-block-wrapper\"\n              data-animation-role=\"image\"\n\n\n\n          ><\/p>\n<div class=\"sqs-image-shape-container-element              has-aspect-ratio\" style=\"                position: relative;                  padding-bottom:133.33334350585938%;                overflow: hidden;-webkit-mask-image: -webkit-radial-gradient(white, black);              \"\n              ><\/p>\n<p>                  <noscript><img decoding=\"async\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/e24baea1-b716-4cf2-ae37-2416ad2f2a19\/IMG_4816+-+Megan+Augusto+%281%29.jpg\" alt=\"Bostyn Delaney\" \/><\/noscript><img decoding=\"async\" class=\"thumb-image\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/e24baea1-b716-4cf2-ae37-2416ad2f2a19\/IMG_4816+-+Megan+Augusto+%281%29.jpg\" data-image=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/e24baea1-b716-4cf2-ae37-2416ad2f2a19\/IMG_4816+-+Megan+Augusto+%281%29.jpg\" data-image-dimensions=\"3024x4032\" data-image-focal-point=\"0.5,0.5\" alt=\"Bostyn Delaney\" data-load=\"false\" data-image-id=\"636d2cf8e4ed1e54ca0bf721\" data-type=\"image\" \/><\/p><\/div>\n<\/p><\/div><figcaption class=\"image-caption-wrapper\">\n<div class=\"image-caption\">\n<p class=\"\" style=\"white-space:pre-wrap;\">Bostyn est un survivant d'un craniopharyngiome \u00e2g\u00e9 de 6 ans qui souffre d'un diab\u00e8te insipide difficile \u00e0 g\u00e9rer.<\/p>\n<\/div>\n<\/figcaption><\/figure>\n<\/p><\/div>\n<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space:pre-wrap;\">Bostyn a \u00e9t\u00e9 diagnostiqu\u00e9 et trait\u00e9 pour une tumeur c\u00e9r\u00e9brale de type craniopharyngiome au cours de l'\u00e9t\u00e9 2021. Depuis lors, il doit effectuer des travaux de laboratoire quotidiens pour g\u00e9rer le diab\u00e8te insipide, une maladie caus\u00e9e par la tumeur ou le traitement, dans laquelle le cerveau ne peut plus g\u00e9rer l'\u00e9quilibre des fluides du corps. Cela peut entra\u00eener un taux \u00e9lev\u00e9 ou faible de sodium dans le sang, qui peut \u00eatre fatal s'il n'est pas g\u00e9r\u00e9 correctement, mais la gestion de cette condition est d\u00e9licate.<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">\"Le plus grand d\u00e9fi de ce voyage a \u00e9t\u00e9 l'inconnu\", explique Megan, la m\u00e8re de Bostyn. \"L'\u00e9tat de Bostyn met sa vie en danger s'il n'est pas surveill\u00e9 et soign\u00e9 correctement. J'ai d\u00fb m'absenter de mon travail des dizaines de fois, parfois pendant un mois.\"<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Bostyn est d\u00e9crite comme une petite fille de six ans pleine d'entrain qui a relev\u00e9 les d\u00e9fis de son \u00e9tat de sant\u00e9 avec gr\u00e2ce. Bien que son \u00e9tat soit effrayant et accablant, elle continue \u00e0 le traverser avec le sourire et en se plaignant le moins possible. Bostyn est tr\u00e8s aimante, attentionn\u00e9e et passionn\u00e9e. Elle aime colorier, jouer avec des perles, faire de l'art du diamant et passer du temps avec sa famille. Megan dit qu'elle est une diva dans tous les sens du terme !<\/p>\n<\/div>\n<figure class=\"block-animation-none\">\n<blockquote data-animation-role=\"quote\" \n<p>   ><br \/>\n    <span>&#8220;<\/span>\"Je suis extr\u00eamement reconnaissante de pouvoir r\u00e9tablir un peu plus de r\u00e9gularit\u00e9 dans la vie quotidienne de ma famille\", conclut Megan.<span>&#8221;<\/span><br \/>\n  <\/blockquote><figcaption class=\"source\">- Megan, la m\u00e8re de Bostyn<\/figcaption><\/figure>\n<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space:pre-wrap;\">Megan d\u00e9crit le poids financier de l'\u00e9tat de Bostyn, qui a commenc\u00e9 le jour o\u00f9 elle a \u00e9t\u00e9 admise \u00e0 l'h\u00f4pital pour des raisons inconnues et o\u00f9 elle a d\u00e9couvert la tumeur, et qui n'a pas cess\u00e9 depuis. En plus d'avoir d\u00fb s'absenter de son travail, il y a eu des dizaines de factures m\u00e9dicales, des frais de transport, de logement et des besoins de base pour les multiples voyages \u00e0 l'h\u00f4pital pour enfants de Boston. Outre le fardeau financier, les autres enfants de Megan ont d\u00fb se passer d'elle pendant des jours, voire des semaines, en raison des multiples d\u00e9placements \u00e0 Boston. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">\"Cela a \u00e9t\u00e9 un d\u00e9fi majeur de devoir aller r\u00e9guli\u00e8rement \u00e0 l'h\u00f4pital pour les examens de laboratoire de Bostyn, car il se trouve \u00e0 45 minutes de chez moi\", d\u00e9clare Megan. \"Bostyn a eu du mal \u00e0 s'alimenter et \u00e0 s'hydrater, prenant souvent des liquides en cachette, ce qui a affect\u00e9 ses r\u00e9sultats de laboratoire. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">L'endocrinologue de Bostyn a d\u00e9termin\u00e9 qu'un analyseur de sang portatif \u00e0 domicile serait une solution et a plaid\u00e9 pour que la famille en re\u00e7oive un. Le fait de pouvoir analyser le sodium \u00e0 la maison sera d'un grand soutien pour Bostyn et ses soignants afin de mieux g\u00e9rer cette maladie, d'\u00e9viter les d\u00e9placements quotidiens en laboratoire et les longs s\u00e9jours \u00e0 l'h\u00f4pital, et de permettre \u00e0 Bostyn de rester \u00e0 la maison avec sa famille. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">\"Je suis extr\u00eamement reconnaissante de cette opportunit\u00e9 de r\u00e9tablir un peu plus de r\u00e9gularit\u00e9 dans la vie quotidienne de ma famille\", conclut Megan.<\/p>\n<\/div>\n<hr \/>\n<div class=\"sqs-html-content\">\n<h2 style=\"text-align:center;white-space:pre-wrap;\">Nous avons besoin de votre soutien<\/h2>\n<p class=\"\" style=\"white-space:pre-wrap;\">La Raymond A. Wood Foundation s'efforce d'am\u00e9liorer la qualit\u00e9 de vie des personnes ayant surv\u00e9cu \u00e0 une tumeur c\u00e9r\u00e9brale. Aidez-nous \u00e0 continuer \u00e0 aider ces patients et leurs familles.<\/p>\n<\/div>\n<div\n  class=\"sqs-block-button-container sqs-block-button-container--center\"\n  data-animation-role=\"button\"\n  data-alignment=\"center\"\n  data-button-size=\"medium\"\n  data-button-type=\"primary\"\n><br \/>\n  <a\n    href=\"\/fr\/roar\/\"\n    class=\"sqs-block-button-element--medium sqs-button-element--primary sqs-block-button-element\"\n\n  ><br \/>\n    D\u00e9couvrez comment<br \/>\n  <\/a>\n<\/div>","protected":false},"excerpt":{"rendered":"<p class=\"\">Bostyn a \u00e9t\u00e9 diagnostiqu\u00e9 et trait\u00e9 pour une tumeur c\u00e9r\u00e9brale de type craniopharyngiome au cours de l'\u00e9t\u00e9 2021. Depuis lors, il doit effectuer des travaux de laboratoire quotidiens pour g\u00e9rer le diab\u00e8te insipide, une maladie caus\u00e9e par la tumeur ou le traitement, dans laquelle le cerveau ne peut plus g\u00e9rer l'\u00e9quilibre des fluides du corps. Cela peut entra\u00eener un taux \u00e9lev\u00e9 ou faible de sodium dans le sang, qui peut \u00eatre fatal s'il n'est pas g\u00e9r\u00e9 correctement, mais la gestion de cette condition est d\u00e9licate.<\/p>","protected":false},"author":6,"featured_media":148,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[21,1],"tags":[],"class_list":["post-147","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blood-analyzer-recipient","category-uncategorized","generate-columns","tablet-grid-50","mobile-grid-100","grid-parent","grid-33","no-featured-image-padding"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Meet Bostyn, Latest Handheld Blood Analyzer Recipient - Raymond A. 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