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McKenzie naci\u00f3 como un preciosa beb\u00e9 de 7 lb 10 oz en febrero de 2013. Naci\u00f3 tras un embarazo normal y un parto bastante f\u00e1cil. Tom\u00e9 vitaminas prenatales, no beb\u00ed, no fum\u00e9 y segu\u00ed todas las indicaciones del m\u00e9dico. Luego, cuando Kenzie era un beb\u00e9, ten\u00eda ictericia y siempre estaba enferma de reflujo. No se amamantaba y no toleraba ninguna f\u00f3rmula despu\u00e9s de cambiarla constantemente seg\u00fan las recomendaciones del pediatra. As\u00ed que abogamos por ella y le hicimos m\u00e1s pruebas, de modo que le hicieron estudios de degluci\u00f3n, resonancia magn\u00e9tica, tomograf\u00eda computarizada y pruebas de alergia, y casi todo result\u00f3 \u00abnormal\u00bb, excepto las pruebas de alergia. As\u00ed que cambiamos completamente su dieta. Tambi\u00e9n empez\u00f3 a recibir terapia f\u00edsica, de desarrollo, ocupacional y del habla a los 9 meses. Se le diagnostic\u00f3 asma y comenz\u00f3 el tratamiento. Le hicieron pruebas de audici\u00f3n y de visi\u00f3n. Le han puesto tubos y le han quitado las am\u00edgdalas. Hemos visto a neur\u00f3logos pedi\u00e1tricos, pediatras del desarrollo, otorrinolaring\u00f3logos y alerg\u00f3logos. Hemos eliminado montones de cosas de su dieta y hemos cambiado constantemente los medicamentos. La hemos tenido en horas de terapias semanales durante 8 a\u00f1os. Pero durante a\u00f1os lo \u00fanico que obtuvimos de los resultados de las pruebas fue \u00abretraso en el desarrollo\u00bb y \u00abbajo tono o hipoton\u00eda\u00bb. As\u00ed que segu\u00ed presionando y seguimos abogando. Estuvimos en una lista de espera durante 2 a\u00f1os para ver a un genetista y, de hecho, nos mudamos de nuevo a Indiana con la esperanza de conseguirlo m\u00e1s r\u00e1pidamente. Finalmente fuimos a Riley en 2017 y obtuvimos nuestro primer diagn\u00f3stico real. A McKenzie le diagnosticaron CLCN4, que es una mutaci\u00f3n gen\u00e9tica extremadamente rara. Tan rara que s\u00f3lo se ha diagnosticado a 50-100 personas en el mundo. Por tanto, se han realizado muy pocos ensayos cl\u00ednicos o investigaciones. Nos aseguraron que, como todo, ella seguir\u00e1 desarroll\u00e1ndose y no retroceder\u00e1. Sigue progresando. Sin embargo, despu\u00e9s de sentarme en las consultas de los m\u00e9dicos y en las salas de espera de las terapias y de presionar por esta ni\u00f1a durante 4 a\u00f1os, en 2017, tras su diagn\u00f3stico, fue la primera vez que me permit\u00ed llorar. Nunca he querido meterla en una caja o etiquetarla como \u00abnecesidades especiales\u00bb o \u00abdiferente\u00bb o algo peor. Porque la verdad es que McKenzie es una hermosa hija de Dios. \u00a1Es feroz! Es peque\u00f1a pero es poderosa. Ha luchado mucho en su peque\u00f1a vida. Es divertid\u00edsima, \u00a1est\u00e1 llena de personalidad! Aunque no habla, da a conocer sus pensamientos a quienes conf\u00eda y ama. Es una alegr\u00eda y ha tra\u00eddo tanta curaci\u00f3n a todos los ni\u00f1os grandes que han estado a nuestro cuidado. Ha sido compasiva y emp\u00e1tica con sus corazones heridos y ha compartido a sus padres y cada uno de los ni\u00f1os grandes se ha enamorado de ella porque los ha querido mucho. En 2018 volvimos al hospital porque empez\u00f3 a tener grandes convulsiones. Creen que hay una conexi\u00f3n entre su mutaci\u00f3n gen\u00e9tica y sus convulsiones. Los m\u00e9dicos creen que cuando se pone enferma es probable que tenga convulsiones. As\u00ed que, adem\u00e1s de preocuparnos de que un resfriado com\u00fan se convierta en bronquitis y neumon\u00eda para nuestra ni\u00f1a asm\u00e1tica y nos lleve al hospital, ahora tenemos que luchar contra las convulsiones. Adem\u00e1s, le diagnosticaron epilepsia. En 2020, despu\u00e9s de trabajar con un terapeuta del comportamiento durante un a\u00f1o y de saber que McKenzie se sent\u00eda tan frustrada por su falta de comunicaci\u00f3n, supimos que ABA era el siguiente paso para su desarrollo. As\u00ed que le hicieron una prueba adicional de autismo y se gan\u00f3 esa etiqueta tambi\u00e9n, lo que le permiti\u00f3 entrar en un maravilloso programa de ABA. McKenzie sigue creciendo y progresando cada d\u00eda. Se est\u00e1 volviendo m\u00e1s coordinada, escucha mejor y se agrava menos. Nuestra mayor deseo para McKenzie es que crezca su comunicaci\u00f3n para que no est\u00e9 tan estresada y podamos entender siempre y ayudar a los dem\u00e1s a entenderla tambi\u00e9n. Nuestros sue\u00f1os a largo plazo para McKenzie son que est\u00e9 sana y sea feliz. Que lea en un nivel de tercer grado, que escriba, que pueda tener un empleo, e idealmente que pueda vivir sola como un miembro plenamente incluido en su comunidad.<\/p>\n
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Si quieres apoyar a McKenzie y a otros ni\u00f1os con CLCN4, considera hacer una donaci\u00f3n a Cure CLCN4. <\/strong><\/span><\/p>\n [\/et_pb_text][et_pb_button button_url=\u00bbhttps:\/\/www.paypal.com\/donate?hosted_button_id=DFUAQJX8LFB8S\u00bb url_new_window=\u00bbon\u00bb button_text=\u00bbDonar ahora\u00bb button_alignment=\u00bbcenter\u00bb _builder_version=\u00bb4.9.3″ _module_preset=\u00bbdefault\u00bb custom_button=\u00bbon\u00bb button_text_size=\u00bb22px\u00bb button_text_color=\u00bb#ffffff\u00bb button_bg_color=\u00bb#12876f\u00bb button_border_width=\u00bb0px\u00bb button_border_color=\u00bb#f0b800″ button_border_radius=\u00bb4px\u00bb button_letter_spacing=\u00bb0px\u00bb button_icon_color=\u00bb#000000″][\/et_pb_button][et_pb_text _builder_version=\u00bb4.5.8″ _module_preset=\u00bbdefault\u00bb]<\/p>\n \u00a0t<\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ admin_label=\u00bbVideo\u00bb _builder_version=\u00bb3.22″ 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Naci\u00f3 tras un embarazo normal y un parto bastante f\u00e1cil. Tom\u00e9 vitaminas prenatales, no beb\u00ed, no fum\u00e9 y segu\u00ed todas las indicaciones del m\u00e9dico. Luego, cuando Kenzie era un beb\u00e9, ten\u00eda ictericia y siempre estaba […]<\/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-2120","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2120","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=2120"}],"version-history":[{"count":5,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2120\/revisions"}],"predecessor-version":[{"id":3142,"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/pages\/2120\/revisions\/3142"}],"wp:attachment":[{"href":"https:\/\/cureclcn4.org\/es\/wp-json\/wp\/v2\/media?parent=2120"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}Ponte en contacto. Participa.<\/h2>\n