{"id":41,"date":"2020-01-15T00:38:18","date_gmt":"2020-01-15T00:38:18","guid":{"rendered":"https:\/\/live-rawf.pantheonsite.io\/2020\/01\/15\/2020-1-14-meet-connor-donahue-latest-beneficiary\/"},"modified":"2023-08-01T19:30:19","modified_gmt":"2023-08-01T19:30:19","slug":"2020-1-14-rencontrer-connor-donahue-dernier-beneficiaire","status":"publish","type":"post","link":"https:\/\/www.rawoodfoundation.org\/fr\/2020\/01\/15\/2020-1-14-meet-connor-donahue-latest-beneficiary\/","title":{"rendered":"Rencontrez Connor Donahue, dernier b\u00e9n\u00e9ficiaire en date"},"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:740px;\"\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:93.24324035644531%;                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\/1579048730498-M7VPVMY2ZUB8J1QP9USP\/connor.jpg\" alt=\"CONNOR (\u00c0 DROITE) EST LE DERNIER B\u00c9N\u00c9FICIAIRE D&#039;UN ANALYSEUR DE SANG PORTABLE POUR L&#039;AIDER \u00c0 G\u00c9RER UN DIAB\u00c8TE INSIPIDE COMPLIQU\u00c9 R\u00c9SULTANT D&#039;UN HAMARTOME HYPOTHALAMIQUE.\" \/><\/noscript><img decoding=\"async\" class=\"thumb-image\" src=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1579048730498-M7VPVMY2ZUB8J1QP9USP\/connor.jpg\" data-image=\"https:\/\/images.squarespace-cdn.com\/content\/v1\/587bc3d946c3c4be42a60e48\/1579048730498-M7VPVMY2ZUB8J1QP9USP\/connor.jpg\" data-image-dimensions=\"740x690\" data-image-focal-point=\"0.5,0.5\" alt=\"CONNOR (\u00c0 DROITE) EST LE DERNIER B\u00c9N\u00c9FICIAIRE D&#039;UN ANALYSEUR DE SANG PORTABLE POUR L&#039;AIDER \u00c0 G\u00c9RER UN DIAB\u00c8TE INSIPIDE COMPLIQU\u00c9 R\u00c9SULTANT D&#039;UN HAMARTOME HYPOTHALAMIQUE.\" data-load=\"false\" data-image-id=\"5e1e5f18c7a87d3abb4c8894\" data-type=\"image\" \/><\/p><\/div>\n<\/p><\/div><figcaption class=\"image-caption-wrapper\">\n<div class=\"image-caption\">\n<p class=\"\">CONNOR (\u00c0 DROITE) EST LE DERNIER B\u00c9N\u00c9FICIAIRE D'UN ANALYSEUR DE SANG PORTABLE POUR L'AIDER \u00c0 G\u00c9RER UN DIAB\u00c8TE INSIPIDE COMPLIQU\u00c9 R\u00c9SULTANT D'UN HAMARTOME HYPOTHALAMIQUE.<\/p>\n<\/div>\n<\/figcaption><\/figure>\n<\/p><\/div>\n<div class=\"sqs-html-content\">\n<p class=\"\" style=\"white-space:pre-wrap;\">Connor, aujourd'hui \u00e2g\u00e9 de 17 ans, est n\u00e9 avec un type rare de tumeur c\u00e9r\u00e9brale appel\u00e9e <a href=\"https:\/\/www.chop.edu\/conditions-diseases\/hypothalamic-hamartoma\">hamartome hypothalamique (HH)<\/a> .  Connor a souffert de crises g\u00e9lastiques (un sympt\u00f4me de HH) d\u00e8s sa naissance. Les crises g\u00e9lastiques sont rares et se traduisent par des \u00e9pisodes de rire nerveux sans d\u00e9clencheur apparent. Ces crises n'ont jamais \u00e9t\u00e9 diagnostiqu\u00e9es jusqu'\u00e0 ce qu'il commence \u00e0 avoir des crises partielles complexes. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Apr\u00e8s avoir \u00e9t\u00e9 admis \u00e0 l'h\u00f4pital \u00e0 l'\u00e2ge de sept ans, ils ont d\u00e9couvert que Connor avait une grosse tumeur au cerveau. On leur a dit qu'elle \u00e9tait inop\u00e9rable. Apr\u00e8s avoir effectu\u00e9 un EEG sur Connor, ils ont d\u00e9couvert qu'il avait des crises continues, m\u00eame lorsqu'il ne pr\u00e9sentait aucun type d'activit\u00e9 convulsive visible.  <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Selon Lisa, la m\u00e8re de Connor, \"on ne nous a pas donn\u00e9 beaucoup d'informations, les m\u00e9dicaments ne semblaient pas avoir beaucoup de succ\u00e8s, et on nous a dit que la chirurgie \u00e9tait trop risqu\u00e9e\".<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Apr\u00e8s sa sortie de l'h\u00f4pital, la famille a cherch\u00e9 sur Internet des informations sur cette terrible maladie et a trouv\u00e9 de l'espoir pour l'hamartome hypothalamique. Il y avait en effet un m\u00e9decin aux \u00c9tats-Unis qui avait l'exp\u00e9rience de l'ablation de ce type de tumeur c\u00e9r\u00e9brale rare. Apr\u00e8s de nombreuses d\u00e9marches administratives aupr\u00e8s de l'assurance, la famille a quitt\u00e9 le New Jersey pour l'Arizona afin de rencontrer le Dr. <a href=\"https:\/\/www.barrowneuro.org\/\">Institut neurologique Barrow<\/a> \u00e0 Phoenix, en Arizona. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Le Dr Rekate a effectu\u00e9 une intervention chirurgicale de huit heures, retirant environ 80 % de la tumeur. Connor est rest\u00e9 trois semaines \u00e0 l'h\u00f4pital en Arizona pour se r\u00e9tablir et a pass\u00e9 la quatri\u00e8me semaine en Arizona en tant que patient ambulatoire. Connor a \u00e9t\u00e9 autoris\u00e9 \u00e0 rentrer chez lui dans le New Jersey sans crise d'\u00e9pilepsie ! <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">C'est comme si on nous avait rendu notre fils\", a d\u00e9clar\u00e9 Lisa. \"Il avait toujours un retard de d\u00e9veloppement, mais le regard fixe, la col\u00e8re et les crises d'\u00e9pilepsie associ\u00e9s \u00e0 l'HH semblaient avoir disparu.\"&nbsp; <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Ils ont \u00e9t\u00e9 inform\u00e9s que <a href=\"https:\/\/www.mayoclinic.org\/diseases-conditions\/diabetes-insipidus\/symptoms-causes\/syc-20351269\">Diab\u00e8te insipide (DI)<\/a> \u00e9tait une possibilit\u00e9, mais il n'a montr\u00e9 aucun signe pendant les quatre semaines qui ont suivi l'op\u00e9ration et tout le monde \u00e9tait convaincu qu'il n'avait pas \u00e0 s'inqui\u00e9ter de l'ID. Environ dix jours apr\u00e8s son retour \u00e0 la maison, Connor a montr\u00e9 des signes de DI et a \u00e9t\u00e9 admis \u00e0 l'h\u00f4pital avec un taux de sodium de 179.  Un taux de sodium normal se situe entre 135 et 145. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Connor \u00e9tait tr\u00e8s, tr\u00e8s malade, et est rest\u00e9 en USIP pendant 3 semaines, et une semaine \u00e0 l'\u00e9tage p\u00e9diatrique.  L'AI de Connor a \u00e9t\u00e9 tr\u00e8s difficile \u00e0 g\u00e9rer. Son taux de sodium est \u00e9lev\u00e9 alors qu'il devrait \u00eatre faible cliniquement, son taux de sodium est faible alors qu'il devrait \u00eatre \u00e9lev\u00e9, les endocrinologues de l'h\u00f4pital pour enfants de Philadelphie ne savent pas pourquoi son DI se pr\u00e9sente de cette mani\u00e8re. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Connor n'a pas une soif intacte et ses soignants surveillent toutes ses entr\u00e9es et sorties de liquides. M\u00eame en mesurant ses fluides, il a \u00e9t\u00e9 hospitalis\u00e9 \u00e0 plusieurs reprises avec un taux de sodium variant de 126 \u00e0 176. <\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">\"La possibilit\u00e9 d'utiliser un analyseur de sang portatif \u00e0 la maison, pour surveiller son taux de sodium lorsque les sympt\u00f4mes apparaissent, serait d'une grande aide dans la gestion de son diab\u00e8te et permettrait, nous l'esp\u00e9rons, de le garder en bonne sant\u00e9 et d'\u00e9viter l'h\u00f4pital\", a d\u00e9clar\u00e9 Lisa. \"Merci d'avoir \u00e9cout\u00e9 son histoire et de nous avoir aid\u00e9s \u00e0 obtenir cet appareil.<\/p>\n<p class=\"\" style=\"white-space:pre-wrap;\">Connor a b\u00e9n\u00e9fici\u00e9 d'un analyseur de sang portable gr\u00e2ce \u00e0 votre soutien lors du Mardi de la g\u00e9n\u00e9rosit\u00e9. Envisagez de faire un don mensuel pour continuer \u00e0 aider des enfants comme Connor.<\/p>\n<\/div>","protected":false},"excerpt":{"rendered":"<p class=\"\" style=\"white-space:pre-wrap;\">Connor, aujourd'hui \u00e2g\u00e9 de 17 ans, est n\u00e9 avec un type rare de tumeur c\u00e9r\u00e9brale appel\u00e9e <a href=\"https:\/\/www.chop.edu\/conditions-diseases\/hypothalamic-hamartoma\">hamartome hypothalamique (HH)<\/a> .  Connor a souffert de crises g\u00e9lastiques (un sympt\u00f4me de HH) d\u00e8s sa naissance. Les crises g\u00e9lastiques sont rares et se traduisent par des \u00e9pisodes de rire nerveux sans d\u00e9clencheur apparent. Ces crises n'ont jamais \u00e9t\u00e9 diagnostiqu\u00e9es jusqu'\u00e0 ce qu'il commence \u00e0 avoir des crises partielles complexes. <\/p>","protected":false},"author":6,"featured_media":6693,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[21,1],"tags":[],"class_list":["post-41","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 Connor Donahue, Latest Beneficiary - Raymond A. 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