{"id":2142,"date":"2025-08-29T20:08:54","date_gmt":"2025-08-29T20:08:54","guid":{"rendered":"https:\/\/www.insiemecontrobatten.it\/?page_id=2142"},"modified":"2025-09-20T07:12:55","modified_gmt":"2025-09-20T07:12:55","slug":"storia-di-rachele","status":"publish","type":"page","link":"https:\/\/www.insiemecontrobatten.it\/en\/storia-di-rachele\/","title":{"rendered":"Rachele\u2019s Story"},"content":{"rendered":"<div data-elementor-type=\"wp-page\" data-elementor-id=\"2142\" class=\"elementor elementor-2142\">\n\t\t\t\t<div class=\"elementor-element elementor-element-93263f3 e-flex e-con-boxed e-con e-parent\" data-id=\"93263f3\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-6c32ff7 e-flex e-con-boxed e-con e-child\" data-id=\"6c32ff7\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-888fcee elementor-widget elementor-widget-heading\" data-id=\"888fcee\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">Rachele's Story<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-4cb475b e-flex e-con-boxed e-con e-parent\" data-id=\"4cb475b\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-458f621 e-con-full e-flex e-con e-child\" data-id=\"458f621\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-57ee7d9 elementor-widget elementor-widget-heading\" data-id=\"57ee7d9\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h4 class=\"elementor-heading-title elementor-size-default\">The First Signs<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-9dbc1b1 elementor-widget elementor-widget-text-editor\" data-id=\"9dbc1b1\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<h3 class=\"translation-block\"><span style=\"font-weight: 400;font-size: 15px;font-style: inherit;color: #364151;font-family: Inter, sans-serif\">Rachele is an 8-year-old girl, cheerful and full of life. Everything seemed to be going normally until her eyes began to tell a different story: small vision problems and unexplained difficulties that initially appeared to be moments of distraction or insecurity led her parents to seek medical advice.\nEye examinations revealed significant abnormalities, marking the beginning of a complex journey in search of answers.<\/span><\/h3>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-a2255fb e-flex e-con-boxed e-con e-parent\" data-id=\"a2255fb\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-a0c49ca e-con-full e-flex e-con e-child\" data-id=\"a0c49ca\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-4ceb789 elementor-widget elementor-widget-heading\" data-id=\"4ceb789\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h4 class=\"elementor-heading-title elementor-size-default\">The Diagnosis<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-21167d9 elementor-widget elementor-widget-text-editor\" data-id=\"21167d9\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"translation-block\">After months of tests and medical evaluations, in May 2025, at the A. Gemelli University Hospital in Rome, the diagnosis was confirmed: Rachele is affected by Batten disease, CLN3 variant (neuronal ceroid lipofuscinosis type 3).\nGenetic testing revealed a homozygous deletion of exons 8 and 9 of the CLN3 gene, consistent with the juvenile form of the disease.\n\nThe diagnostic process was initiated thanks to the insight of a clinician experienced in rare diseases of the visual system, after repeated ophthalmologic exams showed a rapid loss of vision.\nBatten disease is an ultra-rare, genetic, neurodegenerative disorder that, over time, deprives children of vision, motor and cognitive abilities, communication skills, and ultimately puts their very lives at risk.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-c39312a e-flex e-con-boxed e-con e-parent\" data-id=\"c39312a\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-f3a2cae e-con-full e-flex e-con e-child\" data-id=\"f3a2cae\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-b627410 elementor-widget elementor-widget-heading\" data-id=\"b627410\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h4 class=\"elementor-heading-title elementor-size-default\">Hope<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-b4109fe elementor-widget elementor-widget-text-editor\" data-id=\"b4109fe\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"translation-block\">While the disease is severe and progressive, the early diagnosis opened a door.\n<span style=\"font-weight: 400\">Today, the international scientific community is actively working on potential treatments, and experimental clinical trials are underway in the United States, using gene therapies and innovative medications capable of slowing the progression of the disease.\n\nRachele has been enrolled in one of these treatment pathways and is awaiting the start of therapy.\nIt is a precious opportunity: acting now means protecting the abilities she still has, gaining time, and offering a future.<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-0622c82 e-flex e-con-boxed e-con e-parent\" data-id=\"0622c82\" data-element_type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-fc8ff89 e-con-full e-flex e-con e-child\" data-id=\"fc8ff89\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-754d931 elementor-widget elementor-widget-heading\" data-id=\"754d931\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h4 class=\"elementor-heading-title elementor-size-default\">The Challenge<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-9e0cac2 elementor-widget elementor-widget-text-editor\" data-id=\"9e0cac2\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><span style=\"font-weight: 400;\">Per questo \u00e8 nata HOPE4U INSIEME CONTRO BATTEN APS: per sostenere Rachele e la sua famiglia, raccogliere fondi, creare una rete di solidariet\u00e0 e far sentire che non sono soli.\u00a0<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-c96eca9 e-flex e-con-boxed e-con e-parent\" data-id=\"c96eca9\" data-element_type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-5db1738 e-con-full e-flex e-con e-child\" data-id=\"5db1738\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-7e98b1d elementor-widget elementor-widget-heading\" data-id=\"7e98b1d\" data-element_type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h4 class=\"elementor-heading-title elementor-size-default\">A Future to Protect<\/h4>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-728a3ca elementor-widget elementor-widget-text-editor\" data-id=\"728a3ca\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container translation-block\">Rachele\u2019s story is not just a diagnosis written on a medical report.\nIt is the story of a child who loves life, being with others, and playing; of a family that refuses to give up; and of doctors who chose to believe in research.\n\nIt is a story that reminds us of a fundamental principle: <b>no child affected by a rare disease should ever be left behind.<\/b><\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-f008936 elementor-widget elementor-widget-text-editor\" data-id=\"f008936\" data-element_type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p style=\"font-size: 16px; font-style: normal; font-weight: 400; text-align: center;\">You can support us with a donation via bank transfer:<\/p>\n<p style=\"font-size: 16px; font-style: normal; font-weight: 400; text-align: center;\"><span style=\"font-style: inherit; font-weight: inherit;\">Account holder:&nbsp;<\/span><span style=\"font-weight: bold; font-style: inherit;\">HOPE4U INSIEME CONTRO BATTEN APS<\/span><\/p><p style=\"font-size: 16px; font-style: normal; font-weight: 400; text-align: center;\"><span style=\"font-style: inherit;\">C.F.:&nbsp;<strong>92022830548<\/strong><\/span><span style=\"font-weight: bold; font-style: inherit;\"><\/span><\/p>\n<p style=\"font-size: 16px; font-style: normal; font-weight: 400; text-align: center;\">IBAN:&nbsp;<span style=\"font-weight: bold;\">IT10V0344038480000000266600<\/span><\/p>\n<p style=\"font-size: 16px; font-style: normal; font-weight: 400; text-align: center;\">Bank:&nbsp;<span style=\"font-weight: bold;\">Banco Desio<\/span><\/p>\n<p style=\"font-size: 16px; font-style: normal; font-weight: 400; text-align: center;\">Donation purpose:&nbsp;<span style=\"font-weight: bold;\">Donazione<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-3a154d3 e-con-full e-flex e-con e-child\" data-id=\"3a154d3\" data-element_type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-efa61bb elementor-widget elementor-widget-image\" data-id=\"efa61bb\" data-element_type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"246\" height=\"300\" src=\"https:\/\/www.insiemecontrobatten.it\/wp-content\/uploads\/2025\/08\/cropped-logo_raw-60x73.png\" class=\"attachment-medium size-medium wp-image-2126\" alt=\"cropped logo raw\" srcset=\"https:\/\/www.insiemecontrobatten.it\/wp-content\/uploads\/2025\/08\/cropped-logo_raw-246x300.png 246w, https:\/\/www.insiemecontrobatten.it\/wp-content\/uploads\/2025\/08\/cropped-logo_raw-839x1024.png 839w, https:\/\/www.insiemecontrobatten.it\/wp-content\/uploads\/2025\/08\/cropped-logo_raw-768x938.png 768w, https:\/\/www.insiemecontrobatten.it\/wp-content\/uploads\/2025\/08\/cropped-logo_raw-1258x1536.png 1258w, https:\/\/www.insiemecontrobatten.it\/wp-content\/uploads\/2025\/08\/cropped-logo_raw-10x12.png 10w, https:\/\/www.insiemecontrobatten.it\/wp-content\/uploads\/2025\/08\/cropped-logo_raw-60x73.png 60w, https:\/\/www.insiemecontrobatten.it\/wp-content\/uploads\/2025\/08\/cropped-logo_raw.png 1277w\" sizes=\"(max-width: 246px) 100vw, 246px\" title=\"Rachele\u2019s Story\">\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>la storia di Rachele I primi segnali Rachele \u00e8 una bambina di 8 anni, allegra e piena di vita. Tutto sembrava scorrere normalmente fino a quando i suoi occhi hanno iniziato a raccontare qualcosa di diverso: piccoli problemi di vista, difficolt\u00e0 inspiegabili che apparentemente sembravano atteggiamenti di distrazione o insicurezza, hanno spinto i genitori a [&hellip;]<\/p>","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"full-width-container","site-content-style":"unboxed","site-sidebar-style":"unboxed","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","theme-transparent-header-meta":"enabled","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"class_list":["post-2142","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/www.insiemecontrobatten.it\/en\/wp-json\/wp\/v2\/pages\/2142","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.insiemecontrobatten.it\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.insiemecontrobatten.it\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.insiemecontrobatten.it\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.insiemecontrobatten.it\/en\/wp-json\/wp\/v2\/comments?post=2142"}],"version-history":[{"count":24,"href":"https:\/\/www.insiemecontrobatten.it\/en\/wp-json\/wp\/v2\/pages\/2142\/revisions"}],"predecessor-version":[{"id":2350,"href":"https:\/\/www.insiemecontrobatten.it\/en\/wp-json\/wp\/v2\/pages\/2142\/revisions\/2350"}],"wp:attachment":[{"href":"https:\/\/www.insiemecontrobatten.it\/en\/wp-json\/wp\/v2\/media?parent=2142"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}