{"id":19467,"date":"2024-02-22T14:08:12","date_gmt":"2024-02-22T13:08:12","guid":{"rendered":"https:\/\/knetpartage.fr\/?p=19467"},"modified":"2024-04-02T14:56:20","modified_gmt":"2024-04-02T12:56:20","slug":"k-net-partage-va-aider-simon-84","status":"publish","type":"post","link":"https:\/\/knetpartage.fr\/k-net-partage-va-aider-simon-84\/","title":{"rendered":"K NET PARTAGE SOUTIENT SIMON 84"},"content":{"rendered":"<p><img loading=\"lazy\" decoding=\"async\" class=\"image-19468 alignleft\" src=\"https:\/\/knetpartage.fr\/storage\/2024\/01\/simon-combal-bollene.jpg\" alt=\"\" width=\"222\" height=\"167\" \/><img loading=\"lazy\" decoding=\"async\" class=\"image-19679 alignright\" src=\"https:\/\/knetpartage.fr\/storage\/2024\/01\/WhatsApp-Image-2024-02-24-a-08.47.52_fe3b6cf0.jpg\" alt=\"\" width=\"349\" height=\"262\" \/><\/p>\n<p>&nbsp;<\/p>\n<p>\u00ab\u00a0A l\u2019\u00e2ge de deux mois, Simon est \u00e0 6 g d\u2019h\u00e9moglobine nous sommes transf\u00e9r\u00e9s d\u2019urgence \u00e0 l\u2019h\u00f4pital de la Timone au service H\u00e9matologie \/ Oncologie du professeur Michel.<\/p>\n<p>Le verdict, Simon est atteint d\u2019une Thalass\u00e9mie Majeure (h\u00e9moglobinopathie Genova-beta-thalass\u00e9mie majeure), il va avoir besoin de transfusions sanguine s tr\u00e8s r\u00e9guli\u00e8rement. C\u2019est-\u00e0-dire qu\u2019il ne produit quasiment pas d\u2019h\u00e9moglobine et que ses globules rouges sont atrophi\u00e9s.<\/p>\n<p>Simon a \u00e9t\u00e9 un enfant tr\u00e8s courageux, sa vie a \u00e9t\u00e9 ponctu\u00e9e d\u2019hospitalisation r\u00e9guli\u00e8rement pour les transfusions, les traitements les examens de sant\u00e9. Le rythme transfusionnel est \u00e0 peu pr\u00e8s de quinze jours trois semaines. Avec un traitement au quotidien par voie orale.<\/p>\n<p>Pendant 15 ans, il a \u00e9t\u00e9 branch\u00e9 toutes les nuits pour faire passer un traitement qui devait se diffuser en 12 heures.<\/p>\n<p>Simon a d\u00fb subir plusieurs longues hospitalisations en fonction des bilans sanguins et des maladies.<\/p>\n<p>Il a subi une spl\u00e9nectomie compliqu\u00e9e d\u2019une pleur\u00e9sie, plusieurs grippes ont n\u00e9cessit\u00e9s des hospitalisations, un purpura rhumato\u00efde, il a \u00e9t\u00e9 op\u00e9r\u00e9 \u00e9galement d\u2019une Hydroc\u00e8le droite.<\/p>\n<p>Simon a pu suivre un cursus scolaire presque normal, nous avons fait l\u2019\u00e9cole \u00e0 l\u2019h\u00f4pital ce qui lui a permis de ne pas prendre de retard sur ses \u00e9tudes, la Timone permet aux enfants d\u2019avoir des professeurs \u00e0 disposition. Simon \u00e9tant hospitalis\u00e9 pour les \u00e9preuves du brevet des coll\u00e8ges et Baccalaur\u00e9at a pu le faire \u00e0 l\u2019h\u00f4pital. Il est actuellement en Licence Ressources Humaines.<\/p>\n<p>A ce jour, il est toujours transfus\u00e9 toutes les 2 semaines et \u00bd ou trois semaines selon les bilans r\u00e9guliers pour contr\u00f4ler, il fait de l\u2019ost\u00e9oporose et il a eu un retard de croissance et pubertaire. Ce sont les effets secondaires de la maladie. Il a toujours des examens \u00e0 passer pour contr\u00f4ler la maladie chaque ann\u00e9e IRM h\u00e9patique et cardiaque, Examens des yeux, de l\u2019audition, des \u00e9chographies r\u00e9guli\u00e8res sont n\u00e9cessaires\u2026\u00a0\u00bb<\/p>\n<p>Fanny la maman de Simon.<\/p>\n<p><strong>Il est dans l\u2019attente d\u2019une r\u00e9ponse pour une auto- greffe (th\u00e9rapie g\u00e9nique), la m\u00e9thode CRISPER 9.<\/strong><\/p>\n<p>Le don effectu\u00e9 est pour palier \u00e0 tous les frais inh\u00e9rents\u00a0 aux protocoles de soins lourds \u00e0 subir \u00e0 LA TIMONE \u00e0 MARSEILLE.<\/p>\n<p>Le ch\u00e8que correspond \u00e0 la valorisation de 500 000 canetes m\u00e9talliques collect\u00e9es partout en FRANCE.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>&nbsp; \u00ab\u00a0A l\u2019\u00e2ge de deux mois, Simon est \u00e0 6 g d\u2019h\u00e9moglobine nous sommes transf\u00e9r\u00e9s d\u2019urgence \u00e0 l\u2019h\u00f4pital de la Timone au service H\u00e9matologie \/ Oncologie du professeur Michel. Le verdict, Simon est atteint d\u2019une Thalass\u00e9mie Majeure (h\u00e9moglobinopathie Genova-beta-thalass\u00e9mie majeure), il va avoir besoin de transfusions sanguine s tr\u00e8s r\u00e9guli\u00e8rement. C\u2019est-\u00e0-dire qu\u2019il ne produit quasiment [&hellip;]<\/p>\n","protected":false},"author":2,"featured_media":19692,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[46,47],"tags":[],"class_list":["post-19467","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualites-2024","category-resultats-2024"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>K NET PARTAGE SOUTIENT SIMON 84 - KNETPARTAGE<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/knetpartage.fr\/k-net-partage-va-aider-simon-84\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"K NET PARTAGE SOUTIENT SIMON 84 - KNETPARTAGE\" \/>\n<meta property=\"og:description\" content=\"&nbsp; \u00ab\u00a0A l\u2019\u00e2ge de deux mois, Simon est \u00e0 6 g d\u2019h\u00e9moglobine nous sommes transf\u00e9r\u00e9s d\u2019urgence \u00e0 l\u2019h\u00f4pital de la Timone au service H\u00e9matologie \/ Oncologie du professeur Michel. Le verdict, Simon est atteint d\u2019une Thalass\u00e9mie Majeure (h\u00e9moglobinopathie Genova-beta-thalass\u00e9mie majeure), il va avoir besoin de transfusions sanguine s tr\u00e8s r\u00e9guli\u00e8rement. 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