{"id":27316,"date":"2024-08-16T09:29:18","date_gmt":"2024-08-16T07:29:18","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=27316"},"modified":"2024-08-16T10:08:32","modified_gmt":"2024-08-16T08:08:32","slug":"rehabilitation","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/en\/rehabilitation\/","title":{"rendered":"The role of rehabilitation centres &amp; Touching stories from families living with a rare disease"},"content":{"rendered":"<p>Although there is currently no treatment for MECP2 gene duplication syndrome, daily exercise remains very important in treating the symptoms and consequences of the syndrome. Affected children need to be supported and stimulated as much as possible in order to avoid complications, support their development and improve their quality of life.<br><br><\/p>\n\n\n\n<p>We are pleased to share the stories of families around the world whose children suffer from MECP2 duplication syndrome and other rare diseases, and who support their children through rehabilitation centres. These stories are about bravery, determination and boundless love. Each story is unique, influenced by different experiences in different countries and by the specific challenges each child faces. They give us an insight into the realities of living with and managing a disability, and the important role that rehabilitation centres play in this journey. By sharing these stories, our aim is to create a global community, to inspire and to inform. <br><br><\/p>\n\n\n\n<p>But first, let's define what a rehabilitation centre is.<br><br><\/p>\n\n\n\n<p>A rehabilitation centre for children with neurological disabilities is a specialised facility that provides therapy for children whose disorders affect<strong> motor skills, cognitive abilities, communication and general development.<\/strong> <br><br> <\/p>\n\n\n\n<p>These centres bring together a multidisciplinary team of professionals, including neurologists, paediatricians, physiotherapists, occupational therapists, speech therapists, psychologists and social workers. Their collective aim is to maximise these children's functional abilities, independence and overall quality of life. The duration and intensity of therapy programmes may vary depending on the severity of the child's condition and individual goals.<\/p>\n\n\n\n<p>Parents also benefit from psychological support at these centres. Contact with other parents facing similar challenges becomes a valuable part of their experience.<\/p>\n\n\n\n<p>In addition, the rehabilitation centre offers parents a unique opportunity to spend quality time with their child, which is not always possible in the hustle and bustle of everyday life, marked by work, siblings and household chores. For parents, a rehabilitation stay is also a way of learning new techniques to stimulate and improve their children's skills. <br><br> <\/p>\n\n\n\n<p>While specialist centres for children with neurological disabilities do not exist everywhere, it is possible to access a range of rehabilitation services through hospitals, clinics, schools, community programmes or mobile outreach initiatives.<br><br><\/p>\n\n\n\n<p>We invite you to read about the different experiences of four families who have recently stayed in rehabilitation centres with their loved ones.<\/p>\n\n\n\n<div class=\"wp-block-media-text is-stacked-on-mobile\"><figure class=\"wp-block-media-text__media\"><img fetchpriority=\"high\" decoding=\"async\" width=\"991\" height=\"1024\" src=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/13-e1723027034969-991x1024.png\" alt=\"\" class=\"wp-image-27286 size-full\" srcset=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/13-e1723027034969-991x1024.png 991w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/13-e1723027034969-290x300.png 290w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/13-e1723027034969-768x794.png 768w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/13-e1723027034969.png 1071w\" sizes=\"(max-width: 991px) 100vw, 991px\" \/><\/figure><div class=\"wp-block-media-text__content\">\n<p><strong>Jan\u2019s journey at Adeli (Slovakia)<\/strong><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<p>Jan suffers from muscular hypotonia, which means it's difficult for him to learn to walk. The Adeli method, specially designed for children with neurological and motor problems, has helped him a great deal. The heart of the therapy is the Adeli combination, which has helped Jan to strengthen his muscles and take important steps towards walking. <\/p>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-white-color has-text-color has-background wp-element-button\" href=\"https:\/\/dupmecp2.eu\/en\/jan-adeli\/?lang=fr\" style=\"border-radius:15px;background-color:#f7a13f\">Read more<\/a><\/div>\n<\/div>\n\n\n\n<p><\/p>\n<\/div><\/div>\n\n\n\n<div class=\"wp-block-media-text has-media-on-the-right is-stacked-on-mobile\"><div class=\"wp-block-media-text__content\">\n<p><strong>Luzia's stay in Kokon<br>(Bad Erlach Austria)<\/strong><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<p>Luzia is an extraordinary child. She has an unbalanced translocation between two chromosomes, a condition that is not widely described. Luzia's first experience of rehabilitation was a five-week stay at the Kokon centre (Bad Erlach, Austria). This was...<\/p>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-white-color has-text-color has-background wp-element-button\" href=\"https:\/\/dupmecp2.eu\/en\/luzia-kokon\/?lang=fr\" style=\"border-radius:15px;background-color:#f7a13f\">Read more<\/a><\/div>\n<\/div>\n<\/div><figure class=\"wp-block-media-text__media\"><img decoding=\"async\" width=\"961\" height=\"1024\" data-src=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/12-e1723027272794-961x1024.png\" alt=\"\" class=\"wp-image-27292 size-full lazyload\" data-srcset=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/12-e1723027272794-961x1024.png 961w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/12-e1723027272794-282x300.png 282w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/12-e1723027272794-768x818.png 768w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/12-e1723027272794.png 1039w\" data-sizes=\"(max-width: 961px) 100vw, 961px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 961px; --smush-placeholder-aspect-ratio: 961\/1024;\" \/><\/figure><\/div>\n\n\n\n<div class=\"wp-block-media-text is-stacked-on-mobile\"><figure class=\"wp-block-media-text__media\"><img decoding=\"async\" width=\"962\" height=\"1024\" data-src=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/10-e1723027872545-962x1024.png\" alt=\"\" class=\"wp-image-27297 size-full lazyload\" data-srcset=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/10-e1723027872545-962x1024.png 962w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/10-e1723027872545-282x300.png 282w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/10-e1723027872545-768x817.png 768w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/10-e1723027872545.png 1060w\" data-sizes=\"(max-width: 962px) 100vw, 962px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 962px; --smush-placeholder-aspect-ratio: 962\/1024;\" \/><\/figure><div class=\"wp-block-media-text__content\">\n<p><strong>Leon's trip with the dolphins<\/strong> <strong>(Turkey)<\/strong><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<p>Leon is 5 years old and lives in Germany. Last May, he had the pleasure of taking part in dolphin therapy for the second time. The dolphin therapy took place in Lara, Turkey, at the \"mydolphins\" centre. It is recommended to...<\/p>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-white-color has-text-color has-background wp-element-button\" href=\"https:\/\/dupmecp2.eu\/en\/leon-adventures-2\/?lang=fr\" style=\"border-radius:15px;background-color:#f7a13f\">Read more<\/a><\/div>\n<\/div>\n\n\n\n<p><\/p>\n<\/div><\/div>\n\n\n\n<div class=\"wp-block-media-text has-media-on-the-right is-stacked-on-mobile\"><div class=\"wp-block-media-text__content\">\n<p><strong>Ben's stay at Kokon (Rohrbach-Berg, Austria)<\/strong><\/p>\n\n\n\n<hr class=\"wp-block-separator has-alpha-channel-opacity\"\/>\n\n\n\n<p>This year, Ben's rehabilitation took place in May at Kokon Rohrbach-Berg in Upper Austria. It's a great time of year to go for a walk in the fresh air, with less fear of infection. The therapists and staff were...<\/p>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-white-color has-text-color has-background wp-element-button\" href=\"https:\/\/dupmecp2.eu\/en\/ben-kokon\/?lang=fr\" style=\"border-radius:15px;background-color:#f7a13f\">Read more<\/a><\/div>\n<\/div>\n\n\n\n<p><\/p>\n<\/div><figure class=\"wp-block-media-text__media\"><img decoding=\"async\" width=\"975\" height=\"1024\" data-src=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/11-e1723027554419-975x1024.png\" alt=\"\" class=\"wp-image-27302 size-full lazyload\" data-srcset=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/11-e1723027554419-975x1024.png 975w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/11-e1723027554419-286x300.png 286w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/11-e1723027554419-768x806.png 768w, https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/11-e1723027554419.png 1045w\" data-sizes=\"(max-width: 975px) 100vw, 975px\" src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" style=\"--smush-placeholder-width: 975px; --smush-placeholder-aspect-ratio: 975\/1024;\" \/><\/figure><\/div>","protected":false},"excerpt":{"rendered":"<p>Bien qu&rsquo;il n&rsquo;existe actuellement aucun traitement pour le syndrome de duplication du g\u00e8ne MECP2, l&rsquo;entra\u00eenement quotidien reste tr\u00e8s important pour traiter les sympt\u00f4mes et les cons\u00e9quences du syndrome. Les enfants [&hellip;]<\/p>","protected":false},"author":1,"featured_media":27282,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[174],"tags":[],"class_list":["post-27316","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-temoignage"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>R\u00f4le des centres de r\u00e9habilitation &amp; Histoires touchantes de familles vivant avec une maladie rare - DupMECP2<\/title>\n<meta name=\"description\" content=\"Un centre de r\u00e9habilitation pour enfants souffrant de handicaps neurologiques est un \u00e9tablissement sp\u00e9cialis\u00e9 qui fournit des th\u00e9rapies aux enfants dont les troubles affectent leur motricit\u00e9, leurs capacit\u00e9s cognitives, leur communication et leur d\u00e9veloppement g\u00e9n\u00e9ral. Nous vous invitons \u00e0 lire les diff\u00e9rentes exp\u00e9riences de quatre familles qui ont r\u00e9cemment s\u00e9journ\u00e9 dans des centres de r\u00e9habilitation avec leurs proches.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/dupmecp2.eu\/en\/rehabilitation\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"R\u00f4le des centres de r\u00e9habilitation &amp; Histoires touchantes de familles vivant avec une maladie rare - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"Un centre de r\u00e9habilitation pour enfants souffrant de handicaps neurologiques est un \u00e9tablissement sp\u00e9cialis\u00e9 qui fournit des th\u00e9rapies aux enfants dont les troubles affectent leur motricit\u00e9, leurs capacit\u00e9s cognitives, leur communication et leur d\u00e9veloppement g\u00e9n\u00e9ral. Nous vous invitons \u00e0 lire les diff\u00e9rentes exp\u00e9riences de quatre familles qui ont r\u00e9cemment s\u00e9journ\u00e9 dans des centres de r\u00e9habilitation avec leurs proches.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/dupmecp2.eu\/en\/rehabilitation\/\" \/>\n<meta property=\"og:site_name\" content=\"DupMECP2\" \/>\n<meta property=\"article:published_time\" content=\"2024-08-16T07:29:18+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-08-16T08:08:32+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/Newsletter-e1723026850439.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1080\" \/>\n\t<meta property=\"og:image:height\" content=\"1920\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Caroline\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Caroline\" \/>\n\t<meta name=\"twitter:label2\" content=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"4 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/dupmecp2.eu\/rehabilitation\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/rehabilitation\/\"},\"author\":{\"name\":\"Caroline\",\"@id\":\"https:\/\/dupmecp2.eu\/#\/schema\/person\/b41e8cbba153cd974ee340386af279ee\"},\"headline\":\"R\u00f4le des centres de r\u00e9habilitation &#038; Histoires touchantes de familles vivant avec une maladie rare\",\"datePublished\":\"2024-08-16T07:29:18+00:00\",\"dateModified\":\"2024-08-16T08:08:32+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/rehabilitation\/\"},\"wordCount\":771,\"publisher\":{\"@id\":\"https:\/\/dupmecp2.eu\/#organization\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/rehabilitation\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/Newsletter-e1723026850439.png\",\"articleSection\":[\"T\u00e9moignage\"],\"inLanguage\":\"en-GB\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/dupmecp2.eu\/rehabilitation\/\",\"url\":\"https:\/\/dupmecp2.eu\/rehabilitation\/\",\"name\":\"R\u00f4le des centres de r\u00e9habilitation & Histoires touchantes de familles vivant avec une maladie rare - DupMECP2\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/rehabilitation\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/rehabilitation\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2024\/08\/Newsletter-e1723026850439.png\",\"datePublished\":\"2024-08-16T07:29:18+00:00\",\"dateModified\":\"2024-08-16T08:08:32+00:00\",\"description\":\"Un centre de r\u00e9habilitation pour enfants souffrant de handicaps neurologiques est un \u00e9tablissement sp\u00e9cialis\u00e9 qui fournit des th\u00e9rapies aux enfants dont les troubles affectent leur motricit\u00e9, leurs capacit\u00e9s cognitives, leur communication et leur d\u00e9veloppement g\u00e9n\u00e9ral. 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