{"id":66169,"date":"2022-12-30T10:03:44","date_gmt":"2022-12-30T09:03:44","guid":{"rendered":"https:\/\/vosgesinfo.fr\/remiremontinfo\/2022\/12\/pouxeux-livre-decouvrir-quotidien-de-leonie-atteinte-de-ciliopathie\/"},"modified":"2022-12-30T10:03:44","modified_gmt":"2022-12-30T09:03:44","slug":"pouxeux-livre-decouvrir-quotidien-de-leonie-atteinte-de-ciliopathie","status":"publish","type":"post","link":"https:\/\/vosgesinfo.fr\/remiremontinfo\/2022\/12\/pouxeux-livre-decouvrir-quotidien-de-leonie-atteinte-de-ciliopathie\/","title":{"rendered":"Pouxeux\u00a0: un livre pour d\u00e9couvrir le quotidien de L\u00e9onie, atteinte de Ciliopathie"},"content":{"rendered":"<p><a href=\"\/2022\/12\/175293152_494373598607137_4605562539399194878_n.jpg\"><img decoding=\"async\" class=\"alignnone size-large wp-image-360932\" src=\"\/2022\/12\/175293152_494373598607137_4605562539399194878_n-1024x740.jpg\" alt=\"175293152_494373598607137_4605562539399194878_n\" width=\"960\" height=\"694\" \/><\/a><\/p>\n<p><span style=\"font-size: 10pt;\"><em>Photo par\u00a0<a href=\"https:\/\/www.facebook.com\/cilleonie\/\">Association Cil&rsquo;L\u00e9onie<\/a>\u00a0<\/em><\/span><\/p>\n<h2><span style=\"font-size: 12pt;\"><strong>L\u00e9onie est une jeune vosgienne atteinte par une ciliopathie, le syndrome de Saldino Mainzer. Une maladie rare caus\u00e9es par le dysfonctionnement des cils primaires, qui s\u2019attaque \u00e0 tous les organes. Ses parents ont fond\u00e9 l\u2019Association Cil\u2019L\u00e9onie il y a quelques ann\u00e9es pour informer le public, rassembler des fonds et pour aider L\u00e9onie dans son quotidien. <a href=\"https:\/\/www.helloasso.com\/associations\/association-cil-leonie\/boutiques\/affiche-d-antonio-gacia\">Un livre, disponible ici,<\/a> raconte son histoire.<\/strong><\/span><\/h2>\n<p><a href=\"https:\/\/remiremontinfo.fr\/2019\/10\/pouxeux-combat-de-leonie-contre-maladie\/\">Il y a un peu plus de trois ans, sa maman nous pr\u00e9sentait bri\u00e8vement son quotidien.<\/a> L\u00e9onie est malvoyante, elle est atteinte r\u00e9nale, pulmonaire, h\u00e9patique, malformation osseuse. Elle se d\u00e9place principalement en fauteuil roulant. <a href=\"\/2022\/12\/croppedimage-d6ade9e752a24e27860c4d4533d7dd7d.png\"><img decoding=\"async\" class=\" wp-image-360933 alignright\" src=\"\/2022\/12\/croppedimage-d6ade9e752a24e27860c4d4533d7dd7d.png\" alt=\"croppedimage-d6ade9e752a24e27860c4d4533d7dd7d\" width=\"207\" height=\"207\" \/><\/a>Sa famille accompagne la jeune fille dans son quotidien. \u00ab\u00a0Nous devons tout adapter afin que L\u00e9onie puisse avoir une vie d&rsquo;une enfant de 10 ans\u00a0\u00bb. Dans un livre, d\u00e9couvrez l\u2019histoire de L\u00e9onie\u00a0: \u00ab\u00a0A l&rsquo;annonce de la maladie de la petite derni\u00e8re, la famille Mathieu a d\u00e9cid\u00e9 de se battre\u00a0\u00bb. On peut trouver cet ouvrage notamment ici\u00a0:\u00a0<a href=\"https:\/\/www.helloasso.com\/associations\/association-cil-leonie\/boutiques\/affiche-d-antonio-gacia\">Boutique de l\u00e9onie &#8211; Association Cil&rsquo;L\u00e9onie (helloasso.com)<\/a>. Pour suivre l&rsquo;actualit\u00e9 de l&rsquo;association, cliquez ici :\u00a0<a href=\"https:\/\/www.facebook.com\/cilleonie\/\">Association Cil&rsquo;L\u00e9onie<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Photo par\u00a0Association Cil&rsquo;L\u00e9onie\u00a0 L\u00e9onie est une jeune vosgienne atteinte par une ciliopathie, le syndrome de Saldino Mainzer. Une maladie rare [&hellip;]<\/p>\n","protected":false},"author":407,"featured_media":66170,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[26,106,35,13],"tags":[5272,2271,360,107,32],"class_list":["post-66169","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-a-la-une","category-pouxeux","category-remiremont-son-canton","category-societe","tag-association-cilleonie","tag-leonie","tag-livre","tag-pouxeux","tag-vosges"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v22.5 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Pouxeux\u00a0: un livre pour d\u00e9couvrir le quotidien de L\u00e9onie, atteinte de Ciliopathie - Remiremont Info<\/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:\/\/vosgesinfo.fr\/remiremontinfo\/2022\/12\/pouxeux-livre-decouvrir-quotidien-de-leonie-atteinte-de-ciliopathie\/\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:title\" content=\"Pouxeux\u00a0: un livre pour d\u00e9couvrir le quotidien de L\u00e9onie, atteinte de Ciliopathie - Remiremont Info\" \/>\n<meta name=\"twitter:description\" content=\"Photo par\u00a0Association Cil&rsquo;L\u00e9onie\u00a0 L\u00e9onie est une jeune vosgienne atteinte par une ciliopathie, le syndrome de Saldino Mainzer. 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