{"id":10683,"date":"2025-09-21T09:46:45","date_gmt":"2025-09-21T12:46:45","guid":{"rendered":"https:\/\/oficialnoticias.com\/?p=10683"},"modified":"2025-09-21T09:46:49","modified_gmt":"2025-09-21T12:46:49","slug":"familia-de-crianca-mineira-precisa-de-r-2-mi-para-pagar-tratamento-contra-doenca-rara","status":"publish","type":"post","link":"https:\/\/oficialnoticias.com\/?p=10683","title":{"rendered":"Fam\u00edlia de crian\u00e7a mineira precisa de R$ 2 mi para pagar tratamento contra doen\u00e7a rara"},"content":{"rendered":"<p><\/p>\n<div>\n<p>A fam\u00edlia de uma crian\u00e7a mineira mobiliza uma campanha para arrecadar R$ 2 milh\u00f5es para custear o tratamento da filha contra uma doen\u00e7a rara.<\/p>\n<p>J\u00falia Pontes Teixeiras Domingues, de 4 anos, mora com a fam\u00edlia na cidade de S\u00e3o Domingos do Prata, na Regi\u00e3o Central de <bsp-link-enhancement><br \/>\n    <span class=\"LinkEnhancement\"><a class=\"Link\" href=\"https:\/\/www.itatiaia.com.br\/cidades\" title=\"&lt;b&gt;Minas Gerais&lt;\/b&gt;\"><b>Minas Gerais<\/b><\/a><\/span><\/bsp-link-enhancement>. Ela foi diagnosticada com a Lipofuscinose Cer\u00f3ide Neuronal tipo 7 (CLN7), uma varia\u00e7\u00e3o rar\u00edssima da Doen\u00e7a de Batten.<\/p>\n<p>A CLN7 \u00e9 uma doen\u00e7a neurodegenerativa que tem menos de 100 casos registrados no mundo. Pessoas diagnosticadas com a condi\u00e7\u00e3o tem expectativa de vida m\u00e9dia de 10 a 12 anos.<\/p>\n<p>Abaixo, confira como ela afeta o organismo:<\/p>\n<ul>\n<li>Morte progressiva dos neur\u00f4nios;<\/li>\n<li>Crises epil\u00e9pticas severas;<\/li>\n<li>Perda de movimentos e autonomia;<\/li>\n<li>Degenera\u00e7\u00e3o da vis\u00e3o (cegueira progressiva);<\/li>\n<li>Dificuldade crescente na comunica\u00e7\u00e3o e perda da degluti\u00e7\u00e3o.<\/li>\n<\/ul>\n<p>A campanha \u201cSalve a Julinha\u201d tem como meta arrecadar R$ 18 milh\u00f5es para permitir a fabrica\u00e7\u00e3o de um medicamento experimental nos <bsp-link-enhancement><br \/>\n    <span class=\"LinkEnhancement\"><a class=\"Link\" href=\"https:\/\/www.itatiaia.com.br\/politica\/janja-desembarca-nos-eua-tres-dias-antes-de-lula-para-a-assembleia-geral-da-onu\" title=\"&lt;b&gt;Estados Unidos&lt;\/b&gt;\"><b>Estados Unidos<\/b><\/a><\/span><\/bsp-link-enhancement> para frear o avan\u00e7o da doen\u00e7a degenerativa.<\/p>\n<p>Desse valor, R$ 16 milh\u00f5es j\u00e1 foram doados \u00e0 fam\u00edlia. Faltam R$ 2 milh\u00f5es para o objetivo ser alcan\u00e7ado.<\/p>\n<p><bsp-list-loadmore class=\"PageListStandardG\" data-module=\"\" data-show-loadmore=\"true\" data-list-title-size=\"3\" data-list-description-size=\"3\"><\/p>\n<p>    <a class=\"AnchorLink\" title=\"leia-tambem\" name=\"leia-tambem\"\/><\/p>\n<p><\/bsp-list-loadmore><\/p>\n<p>\u201c\u00c9 uma corrida contra o tempo, porque a doen\u00e7a \u00e9 degenerativa e progressiva. O medicamento n\u00e3o devolve o que ela perdeu, apenas pausa a progress\u00e3o\u201d, disse Fernanda Pontes, m\u00e3e de J\u00falia.<\/p>\n<p>Os pais de J\u00falia j\u00e1 realizaram o pagamento de R$ 6 milh\u00f5es \u00e0 empresa farmac\u00eautica, que j\u00e1 iniciou a produ\u00e7\u00e3o do rem\u00e9dio. At\u00e9 outubro, \u00e9 necess\u00e1rio a realiza\u00e7\u00e3o do pagamento de mais R$ 12 milh\u00f5es.<\/p>\n<p>Al\u00e9m de Julinha, outras crian\u00e7as tamb\u00e9m ser\u00e3o beneficiadas pelo tratamento. Como o medicamento est\u00e1 em fase de teste, a aplica\u00e7\u00e3o em outros pacientes \u00e9 obrigat\u00f3ria.<\/p>\n<p>O diagn\u00f3stico foi confirmado no final de 2024. Os primeiros sinais foram observados em abril, quando ela tinha 3 anos e tr\u00eas meses.<\/p>\n<p>Enquanto n\u00e3o inicia o tratamento, J\u00falia faz acompanhamento multidisciplinar intensivo para preservar o m\u00e1ximo de habilidades poss\u00edveis.<\/p>\n<\/p><\/div>\n<p><script>\n  window.fbAsyncInit = function() {\n      FB.init({\n              appId : '1447052969554341',\n          xfbml : true,\n          version : 'v2.9'\n      });\n  };\n  (function(d, s, id){\n     var js, fjs = d.getElementsByTagName(s)[0];\n     if (d.getElementById(id)) {return;}\n     js = d.createElement(s); js.id = id;\n     js.src = \"https:\/\/connect.facebook.net\/en_US\/sdk.js\";\n     fjs.parentNode.insertBefore(js, fjs);\n   }(document, 'script', 'facebook-jssdk'));\n<\/script><\/p>\n","protected":false},"excerpt":{"rendered":"<p>A fam\u00edlia de uma crian\u00e7a mineira mobiliza uma campanha para arrecadar R$ 2 milh\u00f5es para custear o tratamento da filha contra uma doen\u00e7a rara. J\u00falia Pontes Teixeiras Domingues, de 4 anos, mora com a fam\u00edlia na cidade de S\u00e3o Domingos do Prata, na Regi\u00e3o Central de Minas Gerais. Ela foi diagnosticada com a Lipofuscinose Cer\u00f3ide&#8230;<\/p>\n","protected":false},"author":2,"featured_media":10684,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-10683","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-sem-categoria"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Fam\u00edlia de crian\u00e7a mineira precisa de R$ 2 mi para pagar tratamento contra doen\u00e7a rara -<\/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:\/\/oficialnoticias.com\/?p=10683\" \/>\n<meta property=\"og:locale\" content=\"pt_BR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Fam\u00edlia de crian\u00e7a mineira precisa de R$ 2 mi para pagar tratamento contra doen\u00e7a rara -\" \/>\n<meta property=\"og:description\" content=\"A fam\u00edlia de uma crian\u00e7a mineira mobiliza uma campanha para arrecadar R$ 2 milh\u00f5es para custear o tratamento da filha contra uma doen\u00e7a rara. J\u00falia Pontes Teixeiras Domingues, de 4 anos, mora com a fam\u00edlia na cidade de S\u00e3o Domingos do Prata, na Regi\u00e3o Central de Minas Gerais. 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