Em juazeiro (BA), a pequena Ju\u0301lia Raquel Sousa Almeida, de 5 anos de idade, diagnosticada com Atrofia Muscular Espinhal (AME), doen\u00e7a gen\u00e9tica rara grave que afeta os movimentos e a respira\u00e7\u00e3o, espera h\u00e1 mais de um ano pelo medicamento para tratar a doen\u00e7a neuromuscular.<\/p>\n
A crian\u00e7a ganhou o direito de receber a medica\u00e7\u00e3o, ap\u00f3s determina\u00e7\u00e3o da Justi\u00e7a, no entanto o Governo do Estado da Bahia ainda n\u00e3o disponibilizou o medicamento. \u201cJa\u0301 tem um ano que ganhamos o direito a medic\u0327a\u0303o Spinraza, mas ate\u0301 agora nada da minha filha receber a primeira dose. Soube inclusive, que a medic\u0327a\u0303o ja\u0301 esta\u0301 disponi\u0301vel na Sesab em Salvador desde novembro. Na\u0303o entendo essa demora\u201d, desabafou Carla Rafaela Silva, m\u00e3e da crian\u00e7a.<\/p>\n
A reda\u00e7\u00e3o do Blog Edenevaldo Alves entrou em contato com a Secretaria da Sa\u00fade do Estado da Bahia (SESAB) para cobrar uma resposta sobre o caso. A pasta deve se pronunciar para esclarecer a situa\u00e7\u00e3o. (Informa\u00e7\u00f5es Programa Viva Bem \u2013 Petrolina FM).<\/p>\n
Fonte: Blog Edenevaldo Alves<\/p>\n","protected":false},"excerpt":{"rendered":"
Em juazeiro (BA), a pequena Ju\u0301lia Raquel Sousa Almeida, de 5 anos de idade, diagnosticada com Atrofia Muscular Espinhal (AME), doen\u00e7a gen\u00e9tica rara grave que afeta os movimentos e a respira\u00e7\u00e3o, espera h\u00e1 mais de um ano pelo medicamento para tratar a doen\u00e7a neuromuscular. A crian\u00e7a ganhou o direito de receber a medica\u00e7\u00e3o, ap\u00f3s determina\u00e7\u00e3o […]<\/p>\n","protected":false},"author":1,"featured_media":18640,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_uag_custom_page_level_css":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[199,197,205],"tags":[1524,684,1525],"class_list":["post-18639","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-bahia","category-politica","category-saude","tag-atrofia-muscular","tag-crianca","tag-governo-da-bahia"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03.jpeg","uagb_featured_image_src":{"full":["https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03.jpeg",500,405,false],"thumbnail":["https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03-150x150.jpeg",150,150,true],"medium":["https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03-300x243.jpeg",300,243,true],"medium_large":["https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03.jpeg",500,405,false],"large":["https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03.jpeg",500,405,false],"1536x1536":["https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03.jpeg",500,405,false],"2048x2048":["https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03.jpeg",500,405,false],"mantranews-slider-large":["https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03.jpeg",500,405,false],"mantranews-featured-medium":["https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03-420x307.jpeg",420,307,true],"mantranews-featured-long":["https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03-300x405.jpeg",300,405,true],"mantranews-block-medium":["https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03-464x290.jpeg",464,290,true],"mantranews-carousel-image":["https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03.jpeg",500,405,false],"mantranews-block-thumb":["https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03-322x230.jpeg",322,230,true],"mantranews-single-large":["https:\/\/blogopara.com.br\/wp-content\/uploads\/2021\/01\/WhatsApp-Image-2021-01-30-at-13.03.03.jpeg",500,405,false]},"uagb_author_info":{"display_name":"Reda\u00e7\u00e3o geral","author_link":"https:\/\/blogopara.com.br\/index.php\/author\/blogopara"},"uagb_comment_info":0,"uagb_excerpt":"Em juazeiro (BA), a pequena Ju\u0301lia Raquel Sousa Almeida, de 5 anos de idade, diagnosticada com Atrofia Muscular Espinhal (AME), doen\u00e7a gen\u00e9tica rara grave que afeta os movimentos e a respira\u00e7\u00e3o, espera h\u00e1 mais de um ano pelo medicamento para tratar a doen\u00e7a neuromuscular. 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