{"id":4117,"date":"2021-01-23T20:49:45","date_gmt":"2021-01-23T19:49:45","guid":{"rendered":"https:\/\/f101g.org\/een-magisch-getal-la-historia-de-sam-y-sus-padres\/"},"modified":"2026-08-11T14:12:19","modified_gmt":"2026-08-11T12:12:19","slug":"een-magisch-getal-la-historia-de-sam-y-sus-padres","status":"publish","type":"post","link":"https:\/\/f101g.org\/es\/een-magisch-getal-la-historia-de-sam-y-sus-padres\/","title":{"rendered":"\u00abEen magisch getal\u00bb la historia de Sam y sus padres"},"content":{"rendered":"<p style=\"text-align: justify;\"><a href=\"https:\/\/f101g.org\/es\/originalmente\/\" target=\"_blank\" rel=\"noopener\"><strong>En el origen<\/strong><\/a> de la Fundaci\u00f3n 101 Genomas fue el nacimiento de Aur\u00e9lien, que padec\u00eda una forma poco frecuente de una enfermedad rara. Desde el nacimiento de Aur\u00e9lien y el anuncio de su diagn\u00f3stico, ya hemos recorrido un largo camino juntos. Por el camino, nos cruzamos con otros ni\u00f1os con s\u00edndrome de Marfan y sus familias. Tuvimos la oportunidad de conocer a Sam y a sus fant\u00e1sticos padres: Dessie y Laurens.   &nbsp;<\/p>\n<p style=\"text-align: justify;\">Dessie ha relatado la aventura de Sam en un <a href=\"https:\/\/lievesam.weebly.com\/blog\" target=\"_blank\" rel=\"noopener\">blog<\/a> y ahora en un libro que acaba de publicarse en los Pa\u00edses Bajos. Esta es su historia&#8230; <\/p>\n<h3 style=\"text-align: justify;\">La imprevisibilidad de la vida y el amor incondicional por un hijo<\/h3>\n<p style=\"text-align: justify;\">\u00bfQu\u00e9 hacer cuando te enteras de que tu beb\u00e9 est\u00e1 gravemente enfermo? \u00bfC\u00f3mo seguir adelante despu\u00e9s de saber que es poco probable que su hijo viva m\u00e1s de dos a\u00f1os? \u00bfC\u00f3mo se puede mirar al futuro si no hay futuro juntos? \u00bfC\u00f3mo seguir adelante cuando sabes que la vida nunca volver\u00e1 a ser igual?   <\/p>\n<p style=\"text-align: justify;\">\u00abEen magisch getal\u00bb es la historia de Dessie Lividikou, quien, tras un embarazo sin problemas, se entera de que su hijo Sam naci\u00f3 con una rara y grave enfermedad progresiva del tejido conjuntivo, el s\u00edndrome de Marfan neonatal&nbsp;,&nbsp; y es poco probable que viva m\u00e1s de dos a\u00f1os. Junto a su marido Laurens, se ve inmersa en los vericuetos de una medicina incierta y se enfrenta a dif\u00edciles cuestiones sobre la vida y la muerte, el dolor, el miedo y la incertidumbre, pero tambi\u00e9n la esperanza, el amor y la felicidad. Tras un dif\u00edcil per\u00edodo de duelo, deciden aprovechar al m\u00e1ximo su vida con Sam. Hacen una lista de todas las cosas que quieren hacer con \u00e9l y celebran su cumplea\u00f1os cada mes. Entre las numerosas visitas al hospital y las hospitalizaciones, intentan disfrutar juntos de las peque\u00f1as cosas en la medida de lo posible.    <\/p>\n<p style=\"text-align: justify;\">\u00abEen magisch getal\u00bb es una historia hermosa, conmovedora y esperanzadora sobre la imprevisibilidad de la vida y c\u00f3mo afrontarla.<\/p>\n<p style=\"text-align: justify;\">El libro, escrito en neerland\u00e9s, puede encargarse en Bol.com en <a href=\"https:\/\/www.bol.com\/nl\/p\/een-magisch-getal\/9300000004184145\/?country=BE&#038;approved=true&#038;language=nl-BE\" target=\"_blank\" rel=\"noopener\">B\u00e9lgica<\/a> (&nbsp;) o en&nbsp; en los<a href=\"https:\/\/www.bol.com\/nl\/p\/een-magisch-getal\/9300000004184145\/\" target=\"_blank\" rel=\"noopener\">Pa\u00edses Bajos<\/a>.<\/p>\n<p style=\"text-align: justify;\"><strong>Parte de los beneficios de la venta del libro se destinar\u00e1n a financiar la investigaci\u00f3n cient\u00edfica sobre la forma neonatal del s\u00edndrome de Marfan que lleva a cabo el UMC de Amsterdam<\/strong>.<\/p>\n<p>&nbsp;<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-1793 alignnone\" src=\"https:\/\/f101g.org\/wp-content\/uploads\/2021\/01\/Dessie-Family.jpg\" alt=\"\" width=\"854\" height=\"1280\"><\/p>\n<p><em><strong>Foto: Copyright Marijn Scheeres<\/strong><\/em><\/p>\n<p><em><strong>Foto Ent\u00eate: Copyright Anne van Gelder<\/strong><\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>En el origen de la Fundaci\u00f3n 101 Genomas fue el nacimiento de Aur\u00e9lien, que padec\u00eda una forma poco frecuente de &hellip;<\/p>\n","protected":false},"author":3,"featured_media":3338,"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":[186],"tags":[],"class_list":["post-4117","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-marfan"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - 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