{"id":4188,"date":"2018-10-18T20:31:47","date_gmt":"2018-10-18T18:31:47","guid":{"rendered":"https:\/\/f101g.org\/el-futuro-sigue-siendo-incierto-y-apasionante-por-dessie-lividikou\/"},"modified":"2018-10-18T20:31:47","modified_gmt":"2018-10-18T18:31:47","slug":"el-futuro-sigue-siendo-incierto-y-apasionante-por-dessie-lividikou","status":"publish","type":"post","link":"https:\/\/f101g.org\/es\/el-futuro-sigue-siendo-incierto-y-apasionante-por-dessie-lividikou\/","title":{"rendered":"\u00abEl futuro sigue siendo incierto y apasionante\u00bb por Dessie Lividikou"},"content":{"rendered":"

\u00bfPor qu\u00e9 apoya el proyecto 101 Genomas Marfan?<\/h4>\n

Me llamo Dessie Lividikou y soy la madre de Sam. Cuando naci\u00f3, el 24 de septiembre de 2017, supimos que Sam ten\u00eda s\u00edndrome de Marfan neonatal. Disfunci\u00f3n progresiva grave del tejido conjuntivo. Los m\u00e9dicos nos dijeron que la mayor\u00eda de los ni\u00f1os con s\u00edndrome de Marfan neonatal no sobreviven m\u00e1s de dos a\u00f1os.<\/p>\n

Creamos un blog sobre Sam(lievesam.weebly.<\/a>com) y a trav\u00e9s de \u00e9l entramos en contacto con Romain y Ludivine y la Fundaci\u00f3n 101 Genomas. Est\u00e1n haciendo un trabajo fant\u00e1stico y apoyamos plenamente el proyecto 101 Genomas de Marfan. En la actualidad no existe tratamiento para el s\u00edndrome de Marfan, por eso es tan importante una buena investigaci\u00f3n.<\/p>\n

Gracias a nuestro blog, hemos conocido a otros padres de ni\u00f1os con s\u00edndrome de Marfan neonatal que tienen mucho m\u00e1s de dos a\u00f1os. Tambi\u00e9n hemos descubierto que existen grandes diferencias en la forma en que se manifiesta la enfermedad y en los s\u00edntomas que padecen los ni\u00f1os.<\/p>\n

El proyecto 101 Genomas de Marfan pretende estudiar estas diferencias y tratar de explicarlas. Con este proyecto, esperamos desarrollar tratamientos que podr\u00edan ser vitales para Sam, Aur\u00e9lien y otros ni\u00f1os con s\u00edndrome de Marfan.<\/u>.<\/p>\n

Sam se someti\u00f3 a su primera operaci\u00f3n de coraz\u00f3n este verano. El futuro sigue siendo incierto y apasionante. Esperamos que la investigaci\u00f3n m\u00e9dica siga desarroll\u00e1ndose y creemos que este proyecto puede contribuir significativamente a ello.<\/p>\n","protected":false},"excerpt":{"rendered":"

\u00bfPor qu\u00e9 apoya el proyecto 101 Genomas Marfan? Me llamo Dessie Lividikou y soy la madre de Sam. Cuando naci\u00f3, …<\/p>\n","protected":false},"author":3,"featured_media":2738,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[],"tags":[101,102],"class_list":["post-4188","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","tag-marfan-es","tag-paciente"],"acf":[],"yoast_head":"\n"El futuro sigue siendo incierto y apasionante" por Dessie Lividikou - Fundaci\u00f3n 101 Genomas - Gen\u00f3mica para las Enfermedades Raras<\/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:\/\/f101g.org\/es\/el-futuro-sigue-siendo-incierto-y-apasionante-por-dessie-lividikou\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\""El futuro sigue siendo incierto y apasionante" por Dessie Lividikou - Fundaci\u00f3n 101 Genomas - Gen\u00f3mica para las Enfermedades Raras\" \/>\n<meta property=\"og:description\" content=\"\u00bfPor qu\u00e9 apoya el proyecto 101 Genomas Marfan? 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