{"id":1809,"date":"2024-12-28T13:55:31","date_gmt":"2024-12-28T16:55:31","guid":{"rendered":"https:\/\/portal.pi.gov.br\/sesapi\/?p=1809"},"modified":"2024-12-28T14:07:05","modified_gmt":"2024-12-28T17:07:05","slug":"hospital-infantil-encerra-o-ano-com-aplicacao-do-zolgensma-a-terapia-mais-avancada-para-ame","status":"publish","type":"post","link":"https:\/\/portal.pi.gov.br\/sesapi\/2024\/12\/28\/hospital-infantil-encerra-o-ano-com-aplicacao-do-zolgensma-a-terapia-mais-avancada-para-ame\/","title":{"rendered":"Hospital Infantil encerra o ano com aplica\u00e7\u00e3o do Zolgensma, a terapia mais avan\u00e7ada para AME"},"content":{"rendered":"\n<p><\/p>\n\n\n\n<p>Por Cl\u00e1udia Bezerra<\/p>\n\n\n\n<p>O Hospital Infantil Luc\u00eddio Portella (HILP), refer\u00eancia nacional em tratamento pedi\u00e1trico de alta complexidade, encerra o ano com mais uma conquista. O pequeno R.B.S.A., nascido em 3 de maio de 2024, recebeu a aplica\u00e7\u00e3o do Zolgensma, o medicamento mais caro e inovador do mundo no tratamento da Atrofia Muscular Espinhal (AME).<\/p>\n\n\n\n<p>Filho de Tamyres e Vin\u00edcius Silva Sousa, moradores de Buriti Bravo, no Maranh\u00e3o, R.B.S.A. foi diagnosticado precocemente, gra\u00e7as \u00e0 efici\u00eancia da equipe m\u00e9dica do HILP. Agora, com apenas sete meses de vida, ele recebeu a dose \u00fanica do medicamento, que promete transformar sua qualidade de vida e oferecer uma nova perspectiva \u00e0 sua fam\u00edlia.<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img decoding=\"async\" loading=\"lazy\" width=\"768\" height=\"1024\" src=\"https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.03-768x1024.jpeg\" alt=\"\" class=\"wp-image-1811\" srcset=\"https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.03-768x1024.jpeg 768w, https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.03-225x300.jpeg 225w, https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.03-315x420.jpeg 315w, https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.03-405x540.jpeg 405w, https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.03-585x780.jpeg 585w, https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.03-1152x1536.jpeg 1152w, https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.03-947x1263.jpeg 947w, https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.03-624x832.jpeg 624w, https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.03.jpeg 1200w\" sizes=\"(max-width: 768px) 100vw, 768px\" \/><\/figure>\n\n\n\n<p>Este momento fecha o ano com grandes avan\u00e7os para o hospital. Em 30 de julho de 2023, a institui\u00e7\u00e3o realizou a primeira aplica\u00e7\u00e3o de Zolgensma pelo SUS, beneficiando a pequena H.B.M., de um ano e quatro meses. Com a aplica\u00e7\u00e3o em R.B.S.A., o HILP refor\u00e7a seu papel na democratiza\u00e7\u00e3o do acesso a tecnologias de ponta no tratamento de doen\u00e7as raras.<\/p>\n\n\n\n<p>\u201cEncerrar o ano com mais uma aplica\u00e7\u00e3o dessa terapia gen\u00e9tica representa o nosso compromisso com a sa\u00fade das crian\u00e7as. Estamos transformando hist\u00f3rias e dando esperan\u00e7a a muitas fam\u00edlias,\u201d afirmou o diretor geral do HILP, Ribamar Bandeira.<\/p>\n\n\n\n<p>A pediatra Lorena Mesquita, que acompanhou o caso, destacou a import\u00e2ncia do diagn\u00f3stico precoce e da aplica\u00e7\u00e3o do Zolgensma. \u201cInterven\u00e7\u00f5es precoces, como a de R.B.S.A., s\u00e3o cruciais. Ele ter\u00e1 a chance de mudar o curso da doen\u00e7a desde o in\u00edcio, o que garante uma melhor qualidade de vida para ele e sua fam\u00edlia.\u201d<\/p>\n\n\n\n<p>O Zolgensma \u00e9 uma terapia gen\u00e9tica administrada por via intravenosa em dose \u00fanica. Sua a\u00e7\u00e3o corrige o gene respons\u00e1vel pela produ\u00e7\u00e3o da prote\u00edna necess\u00e1ria para os neur\u00f4nios motores, prevenindo o agravamento da doen\u00e7a. \u201cEssa interven\u00e7\u00e3o precoce \u00e9 essencial para crian\u00e7as diagnosticadas nos primeiros meses de vida, como R.B.S.A.,\u201d completou Dra. Lorena.<\/p>\n\n\n\n<p>Emocionada, Tamyres agradeceu pelo cuidado recebido no hospital. \u201cSaber que o R.B.S.A. p\u00f4de receber esse tratamento t\u00e3o perto de casa foi um al\u00edvio. A equipe do HILP nos acolheu e nos deu for\u00e7a em cada passo dessa jornada.\u201d<\/p>\n\n\n\n<p>Com mais de 23 crian\u00e7as em tratamento com Spinraza e habilitado para administrar o Zolgensma, o HILP reafirma sua posi\u00e7\u00e3o como refer\u00eancia no diagn\u00f3stico e tratamento da AME no Brasil. \u201cCelebramos n\u00e3o s\u00f3 os avan\u00e7os tecnol\u00f3gicos, mas tamb\u00e9m o cuidado humanizado que transforma vidas. O ano termina, mas nosso compromisso com a sa\u00fade p\u00fablica permanece,\u201d destacou Dr. Dirceu Campelo, superintendente de Alta Complexidade da SESAPI.<\/p>\n\n\n\n<p>A hist\u00f3ria de R.B.S.A. simboliza o impacto transformador de um sistema de sa\u00fade comprometido e eficiente. O caso reflete a uni\u00e3o de esfor\u00e7os em prol de um futuro melhor para crian\u00e7as com AME e suas fam\u00edlias.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Por Cl\u00e1udia Bezerra O Hospital Infantil Luc\u00eddio Portella (HILP), refer\u00eancia nacional em tratamento pedi\u00e1trico de alta complexidade, encerra o ano com mais uma conquista. O pequeno R.B.S.A., nascido em 3 [&hellip;]<\/p>\n","protected":false},"author":1815,"featured_media":1810,"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\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-scaled.jpeg",1920,2560,false],"thumbnail":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-150x150.jpeg",150,150,true],"medium":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-225x300.jpeg",225,300,true],"medium_large":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-768x1024.jpeg",768,1024,true],"large":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-768x1024.jpeg",768,1024,true],"sgg-420":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-315x420.jpeg",315,420,true],"sgg-540":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-405x540.jpeg",405,540,true],"sgg-780":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-585x780.jpeg",585,780,true],"1536x1536":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-1152x1536.jpeg",1152,1536,true],"2048x2048":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-1536x2048.jpeg",1536,2048,true],"homepage-slider":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-1270x500.jpeg",1270,500,true],"homepage-slider-small":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-947x500.jpeg",947,500,true],"page-top":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-947x1263.jpeg",947,1263,true],"page-small":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-624x832.jpeg",624,832,true],"loop-main":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-365x240.jpeg",365,240,true],"thumb-gallery-widget":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-84x56.jpeg",84,56,true]},"post_excerpt_stackable":"<p>Por Cl\u00e1udia Bezerra O Hospital Infantil Luc\u00eddio Portella (HILP), refer\u00eancia nacional em tratamento pedi\u00e1trico de alta complexidade, encerra o ano com mais uma conquista. O pequeno R.B.S.A., nascido em 3 de maio de 2024, recebeu a aplica\u00e7\u00e3o do Zolgensma, o medicamento mais caro e inovador do mundo no tratamento da Atrofia Muscular Espinhal (AME). Filho de Tamyres e Vin\u00edcius Silva Sousa, moradores de Buriti Bravo, no Maranh\u00e3o, R.B.S.A. foi diagnosticado precocemente, gra\u00e7as \u00e0 efici\u00eancia da equipe m\u00e9dica do HILP. Agora, com apenas sete meses de vida, ele recebeu a dose \u00fanica do medicamento, que promete transformar sua qualidade de vida&hellip;<\/p>\n","category_list":"<a href=\"https:\/\/portal.pi.gov.br\/sesapi\/category\/noticias\/\" rel=\"category tag\">Not\u00edcias<\/a>","author_info":{"name":"joaomarcelo","url":"https:\/\/portal.pi.gov.br\/sesapi\/author\/joaomarcelo\/"},"comments_num":"0 coment\u00e1rio","featured_image_urls_v2":{"full":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-scaled.jpeg",1920,2560,false],"thumbnail":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-150x150.jpeg",150,150,true],"medium":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-225x300.jpeg",225,300,true],"medium_large":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-768x1024.jpeg",768,1024,true],"large":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-768x1024.jpeg",768,1024,true],"sgg-420":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-315x420.jpeg",315,420,true],"sgg-540":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-405x540.jpeg",405,540,true],"sgg-780":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-585x780.jpeg",585,780,true],"1536x1536":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-1152x1536.jpeg",1152,1536,true],"2048x2048":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-1536x2048.jpeg",1536,2048,true],"homepage-slider":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-1270x500.jpeg",1270,500,true],"homepage-slider-small":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-947x500.jpeg",947,500,true],"page-top":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-947x1263.jpeg",947,1263,true],"page-small":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-624x832.jpeg",624,832,true],"loop-main":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-365x240.jpeg",365,240,true],"thumb-gallery-widget":["https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-84x56.jpeg",84,56,true]},"post_excerpt_stackable_v2":"<p>Por Cl\u00e1udia Bezerra O Hospital Infantil Luc\u00eddio Portella (HILP), refer\u00eancia nacional em tratamento pedi\u00e1trico de alta complexidade, encerra o ano com mais uma conquista. O pequeno R.B.S.A., nascido em 3 de maio de 2024, recebeu a aplica\u00e7\u00e3o do Zolgensma, o medicamento mais caro e inovador do mundo no tratamento da Atrofia Muscular Espinhal (AME). Filho de Tamyres e Vin\u00edcius Silva Sousa, moradores de Buriti Bravo, no Maranh\u00e3o, R.B.S.A. foi diagnosticado precocemente, gra\u00e7as \u00e0 efici\u00eancia da equipe m\u00e9dica do HILP. Agora, com apenas sete meses de vida, ele recebeu a dose \u00fanica do medicamento, que promete transformar sua qualidade de vida&hellip;<\/p>\n","category_list_v2":"<a href=\"https:\/\/portal.pi.gov.br\/sesapi\/category\/noticias\/\" rel=\"category tag\">Not\u00edcias<\/a>","author_info_v2":{"name":"joaomarcelo","url":"https:\/\/portal.pi.gov.br\/sesapi\/author\/joaomarcelo\/"},"comments_num_v2":"0 coment\u00e1rio","jetpack_featured_media_url":"https:\/\/portal.pi.gov.br\/sesapi\/wp-content\/uploads\/sites\/101\/2024\/12\/WhatsApp-Image-2024-12-28-at-12.59.05-scaled.jpeg","_links":{"self":[{"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/posts\/1809"}],"collection":[{"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/users\/1815"}],"replies":[{"embeddable":true,"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/comments?post=1809"}],"version-history":[{"count":1,"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/posts\/1809\/revisions"}],"predecessor-version":[{"id":1812,"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/posts\/1809\/revisions\/1812"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/media\/1810"}],"wp:attachment":[{"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/media?parent=1809"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/categories?post=1809"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/portal.pi.gov.br\/sesapi\/wp-json\/wp\/v2\/tags?post=1809"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}