![\"\"](\"https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-1024x683.jpeg\")
<\/figure>\n\n\n\nA primeira aplica\u00e7\u00e3o aconteceu em 30 de julho de 2023 na pequena Helo\u00edsa Barbosa Mendes, de apenas um ano e quatro meses, tornando-a a primeira crian\u00e7a a receber o tratamento no Piau\u00ed.<\/p>\n\n\n\n
A diretora geral do HILP, Dra. Leiva Moura, acrescenta que al\u00e9m do Zolgensma, o hospital acompanha 27 crian\u00e7as em tratamento com Spinraza e o Risdiplam. \u201c Estes s\u00e3o outros medicamentos fundamentais para o controle da doen\u00e7a\u201d.<\/p>\n\n\n\n
“A gente chegou com muito medo, sem entender direito o que era a AME. No HILP fomos acolhidos, orientados e vimos que nossa filha teria acesso ao melhor tratamento. Hoje ela est\u00e1 evoluindo e n\u00f3s temos esperan\u00e7a\u201d, declara Maria Fernanda, m\u00e3e de paciente tratada com Spinraza.<\/p>\n\n\n\n
“Foi aqui que minha filha recebeu o Zolgensma. Nunca vou esquecer o dia em que sa\u00ed com a certeza de que ela teria uma nova chance de viver melhor. Esse hospital \u00e9 um milagre na vida de muitas fam\u00edlias\u201d, fala Caroline Silva, m\u00e3e da pequena Helo\u00edsa.<\/p>\n\n\n\n
Para a m\u00e9dica pedi\u00e1trica, Dra. Lorena, que atua na linha de frente do servi\u00e7o, o trabalho vai al\u00e9m do tratamento: \u201cO diagn\u00f3stico precoce \u00e9 decisivo para mudar o curso da doen\u00e7a. Nosso objetivo \u00e9 garantir que cada crian\u00e7a tenha acesso \u00e0 medica\u00e7\u00e3o no momento certo, com todo o suporte da equipe multidisciplinar. A AME \u00e9 desafiadora, mas com informa\u00e7\u00e3o, cuidado e acesso ao tratamento, \u00e9 poss\u00edvel transformar hist\u00f3rias.”<\/p>\n\n\n\n
O acompanhamento das crian\u00e7as com AME no HILP envolve m\u00e9dicos, terapeutas ocupacionais, nutricionistas, fonoaudi\u00f3logos, psic\u00f3logos e assistentes sociais, garantindo um cuidado integral que vai al\u00e9m da medica\u00e7\u00e3o.<\/p>\n\n\n\n
\u201c O Agosto Roxo \u00e9 mais que um m\u00eas de conscientiza\u00e7\u00e3o: \u00e9 um chamado \u00e0 a\u00e7\u00e3o para que cada crian\u00e7a tenha a chance de viver com qualidade e dignidade\u201d, enfatiza Dra. Lorena Mesquita.<\/p>\n","protected":false},"excerpt":{"rendered":"
Agosto \u00e9 o m\u00eas de conscientiza\u00e7\u00e3o da Atrofia Muscular Espinhal (AME), doen\u00e7a gen\u00e9tica rara que afeta a capacidade do corpo de produzir a prote\u00edna essencial para a sobreviv\u00eancia dos neur\u00f4nios […]<\/p>\n","protected":false},"author":1813,"featured_media":5465,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":[],"categories":[30],"tags":[],"featured_image_urls":{"full":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18.jpeg",1280,854,false],"thumbnail":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-150x150.jpeg",150,150,true],"medium":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-300x200.jpeg",300,200,true],"medium_large":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-768x512.jpeg",768,512,true],"large":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-1024x683.jpeg",887,592,true],"sgg-420":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-420x280.jpeg",420,280,true],"sgg-540":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-540x360.jpeg",540,360,true],"sgg-780":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-780x520.jpeg",780,520,true],"1536x1536":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18.jpeg",1280,854,false],"2048x2048":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18.jpeg",1280,854,false],"homepage-slider":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-1270x500.jpeg",1270,500,true],"homepage-slider-small":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-947x500.jpeg",947,500,true],"page-top":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-947x632.jpeg",947,632,true],"page-small":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-624x416.jpeg",624,416,true],"loop-main":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-365x240.jpeg",365,240,true],"thumb-gallery-widget":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-84x56.jpeg",84,56,true]},"post_excerpt_stackable":"
Agosto \u00e9 o m\u00eas de conscientiza\u00e7\u00e3o da Atrofia Muscular Espinhal (AME), doen\u00e7a gen\u00e9tica rara que afeta a capacidade do corpo de produzir a prote\u00edna essencial para a sobreviv\u00eancia dos neur\u00f4nios motores. A falta dessa prote\u00edna provoca fraqueza muscular progressiva e pode comprometer fun\u00e7\u00f5es vitais como respirar, engolir e se mover. No Piau\u00ed, o Hospital Infantil Luc\u00eddio Portella (HILP) \u00e9 a principal refer\u00eancia no diagn\u00f3stico e tratamento da doen\u00e7a, oferecendo acompanhamento especializado, exames e acesso gratuito \u00e0s medica\u00e7\u00f5es mais avan\u00e7adas do mundo pelo Sistema \u00danico de Sa\u00fade (SUS). \u201cPioneirismo no Brasil, o Hospital Infantil fez hist\u00f3ria ao ser o primeiro hospital…<\/p>\n","category_list":"Not\u00edcias<\/a>","author_info":{"name":"brenocavalcante","url":"https:\/\/portal.pi.gov.br\/sesapi\/author\/brenocavalcante\/"},"comments_num":"0 coment\u00e1rio","featured_image_urls_v2":{"full":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18.jpeg",1280,854,false],"thumbnail":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-150x150.jpeg",150,150,true],"medium":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-300x200.jpeg",300,200,true],"medium_large":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-768x512.jpeg",768,512,true],"large":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-1024x683.jpeg",887,592,true],"sgg-420":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-420x280.jpeg",420,280,true],"sgg-540":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-540x360.jpeg",540,360,true],"sgg-780":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-780x520.jpeg",780,520,true],"1536x1536":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18.jpeg",1280,854,false],"2048x2048":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18.jpeg",1280,854,false],"homepage-slider":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-1270x500.jpeg",1270,500,true],"homepage-slider-small":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-947x500.jpeg",947,500,true],"page-top":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-947x632.jpeg",947,632,true],"page-small":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-624x416.jpeg",624,416,true],"loop-main":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-365x240.jpeg",365,240,true],"thumb-gallery-widget":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2025\/08\/WhatsApp-Image-2025-08-11-at-10.46.18-84x56.jpeg",84,56,true]},"post_excerpt_stackable_v2":" Agosto \u00e9 o m\u00eas de conscientiza\u00e7\u00e3o da Atrofia Muscular Espinhal (AME), doen\u00e7a gen\u00e9tica rara que afeta a capacidade do corpo de produzir a prote\u00edna essencial para a sobreviv\u00eancia dos neur\u00f4nios motores. A falta dessa prote\u00edna provoca fraqueza muscular progressiva e pode comprometer fun\u00e7\u00f5es vitais como respirar, engolir e se mover. 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