{"id":2114,"date":"2021-11-19T15:22:19","date_gmt":"2021-11-19T15:22:19","guid":{"rendered":"https:\/\/cureclcn4.org\/conoce-a-alia\/"},"modified":"2023-01-05T12:15:05","modified_gmt":"2023-01-05T12:15:05","slug":"conoce-a-alia","status":"publish","type":"page","link":"https:\/\/cureclcn4.org\/es\/conoce-a-alia\/","title":{"rendered":"Conoce a Alia"},"content":{"rendered":"

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Conoce a Alia (de Dinamarca)<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=\u00bb1_2,1_2″ use_custom_gutter=\u00bbon\u00bb gutter_width=\u00bb2″ make_equal=\u00bbon\u00bb custom_padding_last_edited=\u00bbon|phone\u00bb _builder_version=\u00bb4.5.8″ background_color=\u00bb#ffffff\u00bb max_width=\u00bb1200px\u00bb custom_padding=\u00bb29px|80px|28px|80px|false|false\u00bb custom_padding_tablet=\u00bb|80px||80px|false|true\u00bb custom_padding_phone=\u00bb40px|30px||30px||true\u00bb box_shadow_style=\u00bbpreset3″ box_shadow_vertical=\u00bb40px\u00bb box_shadow_blur=\u00bb100px\u00bb box_shadow_spread=\u00bb-30px\u00bb box_shadow_color=\u00bbrgba(0,0,0,0.22)\u00bb use_custom_width=\u00bbon\u00bb custom_width_px=\u00bb1200px\u00bb][et_pb_column type=\u00bb1_2″ _builder_version=\u00bb4.5.8″ custom_padding=\u00bb|||\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_image src=\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2021\/08\/Alia_1_grey_for_website.jpg\u00bb title_text=\u00bbAlia_1_grey_for_website\u00bb align=\u00bbcenter\u00bb _builder_version=\u00bb4.9.10″ _module_preset=\u00bbdefault\u00bb width=\u00bb95%\u00bb][\/et_pb_image][\/et_pb_column][et_pb_column type=\u00bb1_2″ _builder_version=\u00bb4.5.8″ custom_padding=\u00bb|||\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_image src=\u00bbhttps:\/\/cureclcn4.org\/wp-content\/uploads\/2021\/08\/Alia_2_grey_for_website.jpg\u00bb title_text=\u00bbAlia_2_grey_for_website\u00bb align=\u00bbcenter\u00bb _builder_version=\u00bb4.9.10″ _module_preset=\u00bbdefault\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row use_custom_gutter=\u00bbon\u00bb gutter_width=\u00bb2″ make_equal=\u00bbon\u00bb custom_padding_last_edited=\u00bbon|phone\u00bb _builder_version=\u00bb4.5.8″ background_color=\u00bb#ffffff\u00bb max_width=\u00bb1200px\u00bb min_height=\u00bb1397.6px\u00bb custom_padding=\u00bb0px|80px|36px|80px|false|false\u00bb custom_padding_tablet=\u00bb|80px||80px|false|true\u00bb custom_padding_phone=\u00bb40px|30px||30px||true\u00bb box_shadow_style=\u00bbpreset3″ box_shadow_vertical=\u00bb40px\u00bb box_shadow_blur=\u00bb100px\u00bb box_shadow_spread=\u00bb-30px\u00bb box_shadow_color=\u00bbrgba(0,0,0,0.22)\u00bb use_custom_width=\u00bbon\u00bb custom_width_px=\u00bb1200px\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.5.8″ custom_padding=\u00bb|||\u00bb custom_padding__hover=\u00bb|||\u00bb][et_pb_text _builder_version=\u00bb4.5.8″ _module_preset=\u00bbdefault\u00bb]Hola a todos,<\/p>\n

Nos gustar\u00eda presentaros a nuestra ni\u00f1a Alia, que tiene 4 a\u00f1os y medio. Naci\u00f3 en febrero de 2017, 10 d\u00edas antes de la fecha prevista. Durante el embarazo, Alia no creci\u00f3 tanto como se esperaba y s\u00f3lo pes\u00f3 2,612 kg al nacer.<\/p>\n

Alia llor\u00f3 con frecuencia durante los primeros seis meses, lo que el m\u00e9dico atribuy\u00f3 a c\u00f3licos. Desde nacimiento ten\u00eda movimientos extra\u00f1os en las piernas y pudimos ver que era diferente a otros beb\u00e9s.<\/p>\n

Cuando Alia cumpli\u00f3 un a\u00f1o, su desarrollo se detuvo. Era muy dif\u00edcil comunicarse con ella, no jugaba con otros ni\u00f1os, viv\u00eda en su propio mundo, desarroll\u00f3 h\u00e1bitos alimenticios selectivos y lo percib\u00eda todo con la boca. Alia s\u00f3lo aprendi\u00f3 a caminar cuando ten\u00eda 2 a\u00f1os, s\u00f3lo hac\u00eda algunos ruidos y no pod\u00eda hablar. En noviembre de 2019, Alia fue diagnosticada con autismo infantil y discapacidad intelectual. En agosto de 2020, tanto Alia como nosotros, sus padres, nos sometimos a pruebas gen\u00e9ticas que revelaron que Alia tiene una mutaci\u00f3n en el gen CLCN4. La mutaci\u00f3n surgi\u00f3 en Alia mientras estaba en el vientre materno; no fue algo que heredara gen\u00e9ticamente de nosotros. Los m\u00e9dicos nos dijeron que s\u00f3lo hab\u00eda otras 6 ni\u00f1as en el mundo con exactamente la misma mutaci\u00f3n y que, por tanto, no pod\u00edan decirnos mucho al respecto.<\/p>\n

Alia se enfrenta a muchos retos cada d\u00eda y sigue siendo muy dif\u00edcil comunicarse con ella. Es extrovertida pero todav\u00eda no puede utilizar el lenguaje. Se da\u00f1a a s\u00ed misma y, cuando est\u00e1 de pie, pasa el 95% del tiempo caminando de puntillas. Tiene movimientos que parecen espasmos y otras dificultades motrices importantes, y no puede caminar muy lejos. Tiene pica, lo que significa que come absolutamente todo, aunque no sea comestible. En la guarder\u00eda come mucha arena, lo que le provoca problemas de est\u00f3mago.<\/p>\n

No podemos exigirle nada a Alia. Necesita una vida cotidiana muy estructurada y predecible, en la que todo se haga preferentemente a su manera. A menudo vomita cuando ve o huele comida que no le gusta. Tambi\u00e9n le resulta muy dif\u00edcil salir en p\u00fablico, as\u00ed que cuando no est\u00e1 en su jard\u00edn de infancia especial, pasamos mucho tiempo con ella en casa.<\/p>\n

En general, Alia es una ni\u00f1a muy feliz y sonriente. En los \u00faltimos seis meses, ha empezado a buscar m\u00e1s contacto y le gusta que la abracemos y la besemos, pero de forma un poco brusca. Cuando est\u00e1 muy contenta, agita los brazos, pero cuando est\u00e1 triste o muy enfadada vomita y se golpea en la cabeza o nos pega y muerde a nosotros y a sus hermanos.<\/p>\n

Alia necesita ser consciente de su propio cuerpo y por eso suele llevar un chaleco tranquilizador que le da un poco m\u00e1s de paz. S\u00f3lo puede quedarse quieta si lleva el chaleco tranquilizador, de lo contrario est\u00e1 en constante movimiento e inquieta.<\/p>\n

Estamos muy preocupados por el futuro de Alia, ya que los m\u00e9dicos no pueden decirnos nada sobre este s\u00edndrome. Esperamos conocer a otras familias con las que compartir nuestras preocupaciones y alegr\u00edas.<\/p>\n

El estado de Alia sigue siendo una gran fuente de dolor para nosotros. Nuestro mayor deseo es que su contacto y comunicaci\u00f3n mejoren para que podamos ayudarla y satisfacer sus necesidades de la mejor manera posible.<\/p>\n

Ella es nuestro peque\u00f1o rayo de sol.<\/p>\n

Xo xo Alia y su familia[\/et_pb_text][et_pb_text _builder_version=\u00bb4.9.3″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb||15px|||\u00bb]<\/p>\n

Si quieres apoyar a Alia y a otros ni\u00f1os con CLCN4, considera hacer una donaci\u00f3n a Cure CLCN4. <\/strong><\/span><\/p>\n

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Ponte en contacto. Participa.<\/h2>\n

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Conoce a Alia (de Dinamarca)Hola a todos, Nos gustar\u00eda presentaros a nuestra ni\u00f1a Alia, que tiene 4 a\u00f1os y medio. Naci\u00f3 en febrero de 2017, 10 d\u00edas antes de la fecha prevista. Durante el embarazo, Alia no creci\u00f3 tanto como se esperaba y s\u00f3lo pes\u00f3 2,612 kg al nacer. Alia llor\u00f3 con frecuencia durante los […]<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"class_list":["post-2114","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2114","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/comments?post=2114"}],"version-history":[{"count":6,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2114\/revisions"}],"predecessor-version":[{"id":3098,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2114\/revisions\/3098"}],"wp:attachment":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/media?parent=2114"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}