{"id":42893,"date":"2021-09-06T10:28:53","date_gmt":"2021-09-06T08:28:53","guid":{"rendered":"https:\/\/vosgesinfo.fr\/saintdieinfo\/2021\/09\/vosges-cagnotte-leetchi-amenager-maison-de-leonie-atteinte-dune-ciliopathie\/"},"modified":"2021-09-06T10:28:53","modified_gmt":"2021-09-06T08:28:53","slug":"vosges-cagnotte-leetchi-amenager-maison-de-leonie-atteinte-dune-ciliopathie","status":"publish","type":"post","link":"https:\/\/vosgesinfo.fr\/saintdieinfo\/2021\/09\/vosges-cagnotte-leetchi-amenager-maison-de-leonie-atteinte-dune-ciliopathie\/","title":{"rendered":"Vosges \u2013 Une cagnotte Leetchi pour am\u00e9nager la maison de L\u00e9onie, atteinte d\u2019une ciliopathie"},"content":{"rendered":"<div id=\"attachment_171401\" style=\"width: 810px\" class=\"wp-caption aligncenter\"><a href=\"\/2021\/09\/11.png\" target=\"_blank\" rel=\"noopener\"><img decoding=\"async\" aria-describedby=\"caption-attachment-171401\" class=\"wp-image-171401 size-full\" src=\"\/2021\/09\/11.png\" alt=\"1\" width=\"800\" height=\"579\" \/><\/a><p id=\"caption-attachment-171401\" class=\"wp-caption-text\">(Photographie de la cagnotte Leetchi)<\/p><\/div>\n<h2><span style=\"font-size: 14pt;\"><strong>Une cagnotte Leetchi a \u00e9t\u00e9 cr\u00e9\u00e9e r\u00e9cemment afin d\u2019aider \u00e0 la r\u00e9alisation de travaux d\u2019adaptation de la maison de L\u00e9onie, atteinte d\u2019une ciliopathie, \u00e0 ses handicaps. Il est en effet n\u00e9cessaire de r\u00e9aliser une chambre, une salle de bain, et un am\u00e9nagement pour acc\u00e9der de plein pied \u00e0 l\u2019\u00e9tage de la maison.<\/strong><\/span><\/h2>\n<p><!--more--><\/p>\n<p>La ciliopathie est une maladie tr\u00e8s rare. \u00ab On d\u00e9signe sous le terme de ciliopathies un groupe de maladies caus\u00e9es par le dysfonctionnement des cils primaires ou des cils mobiles, qui pr\u00e9sentent des ph\u00e9notypes r\u00e9currents : malformations c\u00e9r\u00e9brales, dystrophie r\u00e9tinienne, maladie r\u00e9nale kystique, fibrose h\u00e9patique et anomalies squelettiques \u00bb, apprend on sur le site medecinesciences.org. Il existe en fait plusieurs syndromes de la maladie. L\u00e9onie est atteinte de la forme la plus rare de ceux-ci. <em>\u00ab On a d\u00e9couvert qu\u2019elle \u00e9tait malade au tout d\u00e9but de la maternelle \u00bb<\/em>,\u00a0<a href=\"https:\/\/remiremontinfo.fr\/2019\/10\/pouxeux-combat-de-leonie-contre-maladie\/\" target=\"_blank\" rel=\"noopener\">nous expliquait sa maman en 2019.<\/a>\u00a0<em>\u00ab A la base on pensait que L\u00e9onie faisait du diab\u00e8te \u00bb.<\/em> Il a \u00e9t\u00e9 tr\u00e8s compliqu\u00e9 de trouver la maladie en question, de nombreux test ont \u00e9t\u00e9 n\u00e9cessaires.<\/p>\n<p>Le cils primaires des organes de Le\u0301onie meurent progressivement. Ses principaux organes sont touche\u0301s, ses reins, son foie, sa rate, ses poumons, son syste\u0300me digestif, ses yeux. <em>\u00ab\u00a0Les proble\u0300mes de sante\u0301 de Le\u0301onie s\u2019aggravent tre\u0300s rapidement. Elle perd tre\u0300s rapidement la vue, ses poumons ne fonctionnent plus a\u0300 une capacite\u0301 \u00ab\u00a0normale\u00a0\u00bb\u00a0\u00bb<\/em>. C\u2019est pourquoi il est n\u00e9cessaire d\u2019adapter son environnement et de s\u2019\u00e9quiper. <em>\u00ab\u00a0Notre petite cacahue\u0300te a besoin de beaucoup d\u2019e\u0301quipements pour simplifier sa vie avec son handicap. Sa vue complique ses de\u0301placements, l\u2019e\u0301clairage est primordial pour elle, ses hospitalisations compliquent l\u2019apprentissage scolaire\u00a0\u00bb.<\/em> Pour aider Le\u0301onie a\u0300 re\u0301aliser ses re\u0302ves, \u00e0 avoir une vie de qualite\u0301 malgre\u0301 sa maladie, rendez-vous sur\u00a0:\u00a0<a href=\"https:\/\/www-ebrc.leetchi.com\/c\/cilleonie-wxdezkbw?fbclid=IwAR0vtZ6dmn0DH-5RqM29aaCjRScS3Ku_6Xv8hPhrf0uFYGhP27TmHcuWBMQ\" target=\"_blank\" rel=\"noopener\">Cagnotte : Cil\u2019L\u00e9onie \u2013 Leetchi.com<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Une cagnotte Leetchi a \u00e9t\u00e9 cr\u00e9\u00e9e r\u00e9cemment afin d\u2019aider \u00e0 la r\u00e9alisation de travaux d\u2019adaptation de la maison de L\u00e9onie, [&hellip;]<\/p>\n","protected":false},"author":44,"featured_media":23651,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[460,17,18],"tags":[7671,8756,8757],"class_list":["post-42893","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-a-la-une","category-vie-associative","category-vosges","tag-cagnotte-leetchi","tag-cilleonie","tag-ciliopathie"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.5 - 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