{"id":27929,"date":"2025-10-22T11:09:17","date_gmt":"2025-10-22T09:09:17","guid":{"rendered":"https:\/\/ela-asso.com\/?post_type=news&#038;p=27929"},"modified":"2025-10-22T11:33:27","modified_gmt":"2025-10-22T09:33:27","slug":"the-disease-has-taken-everything-from-them-lets-not-abandon-them","status":"publish","type":"news","link":"https:\/\/ela-asso.com\/en\/actualites\/the-disease-has-taken-everything-from-them-lets-not-abandon-them\/","title":{"rendered":"The disease has taken everything from them, let\u2019s not abandon them!"},"content":{"rendered":"\n\n<div class=\"block-wrapper\">\n    <div class=\"container-content\">\n        <h3>Alexander disease: a very rare leukodystrophy for science, but very real for Sofi\u00e8ne and Lilas<\/h3>\n<p>Like all children, Sofi\u00e8ne and Lilas wanted to dance and ride bikes. But like 1 in 1 million children, they had to give up their childhood dreams.<\/p>\n<p><!--more--><\/p>\n<p>When Alexander disease strikes, it attacks the myelin, the protective sheath surrounding the nervous system. Symptoms can develop rapidly: mental retardation, epilepsy, motor impairment, and neurological disorders that appear overnight&#8230;<\/p>\n<p>When this ultra-rare leukodystrophy affects a child, it also affects the whole family: daily care, administrative and financial difficulties. Very often, parents give up everything to care for their sick child.<\/p>\n<p>Coralie, Lilas\u2019s mother, shares her story: <em>\u201cAt first, we attributed her slight motor delay to her premature birth. But things changed. A fall on her head, followed by a bout of COVID and flu, accelerated the process. We didn&#8217;t know how harmful a high fever could be with leukodystrophy. Lilas was no longer accepted in her municipal dance class as the disease progressed.<\/em><br \/>\n<em>It was very hard to see her rejected like that. Our children need to live among others, we have to change the rules! Above all, we must not remain alone, and the ELA association is invaluable in this regard. It provides us with very practical support. We need help, not pity.\u201d<\/em><\/p>\n\n            <\/div>\n<\/div>\n\n\n\n\n\n\n\n\n<div class=\"videos\">\n    <div class=\"container-content-small\">\n        <div class=\"single-video-wrapper\">\n            <div class=\"video\">\n                <iframe loading=\"lazy\" title=\"Sofi\u00e8ne et Lilas, deux enfants touch\u00e9s par la maladie d&#039;Alexander\" width=\"640\" height=\"360\" src=\"https:\/\/www.youtube.com\/embed\/kqJiLzF-xZA?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>            <\/div>\n            <div class=\"download\">\n                <span>Discover the testimonials of Sofi\u00e8ne, Lilas, and their families.<\/span>\n                                <a class=\"btn-primary\" href=\"#\" target=\"\">T\u00e9l\u00e9charger<\/a>\n                            <\/div>\n        <\/div>\n    <\/div>\n<\/div>\n\n\n\n\n<div class=\"block-wrapper\">\n    <div class=\"container-content\">\n        <h3>ELA: essential and solid support for research<\/h3>\n<p>Since its creation, the ELA association has been doing everything possible to support children and their families, but also to combat the disease at its root by funding scientific projects that have been little explored by laboratories or institutions until now. The current research being conducted by Dr. Angela Gritti&#8217;s team is promising\u2014although patience is still required. However, the gene therapy developed here could reduce the expression or directly correct the defective gene&#8230; Enough to envisage effective treatments within a few years.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-full wp-image-27397\" src=\"https:\/\/ela-asso.com\/wp-content\/uploads\/2025\/09\/Diapo-Mailing-Automne-25-Angela-Gritti.jpg\" alt=\"\" width=\"1000\" height=\"667\" \/><\/p>\n\n            <\/div>\n<\/div>\n\n\n\n\n\n<div class=\"block-wrapper\">\n    <div class=\"container-content\">\n        <p>To achieve this, we must continue to fight on two fronts: supporting families and funding research. This action is all the more important because it is exceptional: leukodystrophies are rare diseases, and Alexander disease is even rarer. Obtaining funding for projects such as those led by Angela Gritti is therefore particularly difficult.<\/p>\n<p><strong>No matter how much you donate, it will ultimately contribute to one thing: giving hope back to sick children.<\/strong><\/p>\n\n            <\/div>\n<\/div>\n\n\n\n\n\n<div class=\"single-button\">\n<div class=\"container-small\">\n    <a href=\"https:\/\/donner.ela-asso.com\/\" target=\"_blank\" class=\"btn-primary tracked-button\" data-label=\"Mailing Automne 2025\">I&#8217;m making a donation<\/a>\n<\/div>\n<\/div>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":27402,"parent":0,"template":"","news_categories":[117],"class_list":["post-27929","news","type-news","status-publish","has-post-thumbnail","hentry","news_categories-testimony"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.0 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>The disease has taken everything from them, let\u2019s not abandon them! 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