{"id":7459,"date":"2026-01-02T11:27:14","date_gmt":"2026-01-02T11:27:14","guid":{"rendered":"https:\/\/cureclcn4.org\/conheca-ashley-jai\/"},"modified":"2026-01-02T11:27:16","modified_gmt":"2026-01-02T11:27:16","slug":"conheca-ashley-jai","status":"publish","type":"page","link":"https:\/\/cureclcn4.org\/pt-br\/conheca-ashley-jai\/","title":{"rendered":"Conhe\u00e7a Ashley-Jai"},"content":{"rendered":"

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Conhe\u00e7a Ashley-Jai (da Inglaterra, Reino Unido)<\/h2>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ use_custom_gutter=”on” gutter_width=”2″ make_equal=”on” custom_padding_last_edited=”on|phone” _builder_version=”4.5.8″ background_color=”#ffffff” max_width=”1200px” custom_padding=”29px|80px|28px|80px|false|false” custom_padding_tablet=”|80px||80px|false|true” custom_padding_phone=”40px|30px||30px||true” box_shadow_style=”preset3″ box_shadow_vertical=”40px” box_shadow_blur=”100px” box_shadow_spread=”-30px” box_shadow_color=”rgba(0,0,0,0.22)” use_custom_width=”on” custom_width_px=”1200px”][et_pb_column type=”1_2″ _builder_version=”4.5.8″ custom_padding=”|||” custom_padding__hover=”|||”][et_pb_image src=”https:\/\/cureclcn4.org\/wp-content\/uploads\/2021\/05\/Ashley_Jai_website_1.jpg” title_text=”Ashley_Jai_website_1″ _builder_version=”4.9.4″ _module_preset=”default” max_width=”76%” module_alignment=”center”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.5.8″ custom_padding=”|||” custom_padding__hover=”|||”][et_pb_image src=”https:\/\/cureclcn4.org\/wp-content\/uploads\/2021\/05\/Ashley_Jai_website_2.jpg” title_text=”Ashley_Jai_website_2″ _builder_version=”4.9.4″ _module_preset=”default” max_width=”82%” module_alignment=”center”][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row use_custom_gutter=”on” gutter_width=”2″ make_equal=”on” custom_padding_last_edited=”on|phone” _builder_version=”4.5.8″ background_color=”#ffffff” max_width=”1200px” min_height=”649.6px” custom_padding=”29px|80px|28px|80px|false|false” custom_padding_tablet=”|80px||80px|false|true” custom_padding_phone=”40px|30px||30px||true” box_shadow_style=”preset3″ box_shadow_vertical=”40px” box_shadow_blur=”100px” box_shadow_spread=”-30px” box_shadow_color=”rgba(0,0,0,0.22)” use_custom_width=”on” custom_width_px=”1200px”][et_pb_column type=”4_4″ _builder_version=”4.5.8″ custom_padding=”|||” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.5.8″ _module_preset=”default”]<\/p>\n

INGL\u00caS<\/strong><\/p>\n

Ashley-Jai \u00e9 um garoto de 9 anos muito gentil e curioso de uma pequena cidade no sudoeste da Inglaterra, no Reino Unido. Ele adora Thomas The Tank e uma de suas coisas favoritas \u00e9 passar o tempo ao ar livre em seu balan\u00e7o. <\/p>\n

Em maio de 2020, Ashley-Jai foi diagnosticado com uma muta\u00e7\u00e3o no gene CLCN4. O diagn\u00f3stico foi feito por meio do projeto 100.000 genomas, uma iniciativa destinada a sequenciar 100.000 genomas de cerca de 85.000 pacientes do NHS afetados por uma doen\u00e7a rara, \u00e0 qual Ashley-Jai e sua m\u00e3e, Dawn, aderiram em 2016. <\/p>\n

Para a fam\u00edlia de Ashley-Jai, o diagn\u00f3stico de CLCN4 trouxe uma sensa\u00e7\u00e3o de al\u00edvio. Desde o nascimento, Ashley-Jai sofria de uma longa lista de sintomas, como atraso na fala e na linguagem, autismo, comportamentos obsessivos e repetitivos e problemas intestinais e de sono, mas sem nenhuma ideia da causa por tr\u00e1s deles. \u00c9 claro que o diagn\u00f3stico de CLCN4 n\u00e3o redefiniu quem Ashley-Jai \u00e9, um garotinho carinhoso que adora n\u00fameros e atividades ao ar livre, mas permitiu que seus pais entendessem por que Ashley-Jai tinha determinados comportamentos e necessidades. <\/p>\n

Para a m\u00e3e de Ashley-Jai, um dos aspectos mais desafiadores do diagn\u00f3stico de CLCN4 \u00e9 a falta de reconhecimento como uma doen\u00e7a e o pouco conhecimento sobre como ela progride ao longo do tempo. Ela espera que a pesquisa cient\u00edfica melhore nossa compreens\u00e3o e conscientiza\u00e7\u00e3o sobre a CLCN4 como uma doen\u00e7a, para que um dia, ao ir a uma consulta com um novo cl\u00ednico geral ou conversar com os novos professores de Ashley-Jai, n\u00e3o seja necess\u00e1rio explicar o que \u00e9 a CLCN4, como ela pode se apresentar e qual a melhor forma de cuidar e ajudar crian\u00e7as como Ashley-Jai. <\/p>\n

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Se voc\u00ea quiser apoiar Ashley-Jai e outras crian\u00e7as com CLCN4, considere fazer uma doa\u00e7\u00e3o para a Cure CLCN4. <\/strong><\/span> <\/strong><\/span><\/p>\n

[\/et_pb_text][et_pb_button button_url=”https:\/\/www.paypal.com\/donate?hosted_button_id=DFUAQJX8LFB8S” url_new_window=”on” button_text=”Doe agora ” button_alignment=”center” _builder_version=”4.9.3″ _module_preset=”default” custom_button=”on” button_text_size=”22px” button_text_color=”#ffffff” button_bg_color=”#12876f” button_border_width=”0px” button_border_color=”#f0b800″ button_border_radius=”4px” button_letter_spacing=”0px” button_icon_color=”#000000″][\/et_pb_button][et_pb_text _builder_version=”4.5.8″ _module_preset=”default”]<\/p>\n

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[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Video” _builder_version=”3.22″ background_color=”#3a897e” custom_padding=”0|1px|0|0px|false|false” collapsed=”off”][et_pb_row _builder_version=”4.5.8″ _module_preset=”default”][et_pb_column type=”4_4″ _builder_version=”4.5.8″ _module_preset=”default”][et_pb_divider show_divider=”off” _builder_version=”4.5.8″ _module_preset=”default”][\/et_pb_divider][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ fullwidth=”on” _builder_version=”3.22″ background_color=”#f7f9f9″ use_background_color_gradient__hover=”off” use_background_color_gradient__hover_enabled=”off” background_color_gradient_start__hover=”#2b87da” background_color_gradient_start__hover_enabled=”#2b87da” background_color_gradient_end__hover=”#29c4a9″ background_color_gradient_end__hover_enabled=”#29c4a9″ background_color_gradient_type__hover=”linear” background_color_gradient_type__hover_enabled=”linear” background_color_gradient_direction__hover=”180deg” background_color_gradient_direction__hover_enabled=”180deg” background_color_gradient_direction_radial__hover=”center” background_color_gradient_direction_radial__hover_enabled=”center” background_color_gradient_start_position__hover=”0%” background_color_gradient_start_position__hover_enabled=”0%” background_color_gradient_end_position__hover=”100%” background_color_gradient_end_position__hover_enabled=”100%” background_color_gradient_overlays_image__hover=”off” background_color_gradient_overlays_image__hover_enabled=”off” parallax__hover=”off” parallax__hover_enabled=”off” parallax_method__hover=”on” parallax_method__hover_enabled=”on” background_size__hover=”cover” background_size__hover_enabled=”cover” background_position__hover=”center” background_position__hover_enabled=”center” background_repeat__hover=”no-repeat” background_repeat__hover_enabled=”no-repeat” background_blend__hover=”normal” background_blend__hover_enabled=”normal” allow_player_pause__hover=”off” allow_player_pause__hover_enabled=”off” background_video_pause_outside_viewport__hover=”on” background_video_pause_outside_viewport__hover_enabled=”on”][et_pb_fullwidth_image src=”https:\/\/cureclcn4.org\/wp-content\/uploads\/2020\/08\/charity-23.png” _builder_version=”3.17.6″ animation_style=”slide” animation_direction=”bottom” animation_intensity_slide=”4%”][\/et_pb_fullwidth_image][\/et_pb_section][et_pb_section fb_built=”1″ admin_label=”Footer” _builder_version=”3.22″ background_color=”rgba(14,113,98,0.9)” use_background_color_gradient=”on” background_color_gradient_start=”#0e7162″ background_color_gradient_end=”rgba(14,113,98,0.88)” background_color_gradient_overlays_image=”on” background_image=”https:\/\/cureclcn4.org\/wp-content\/uploads\/2020\/08\/charity-25.jpg” collapsed=”off”][et_pb_row _builder_version=”3.25″][et_pb_column type=”4_4″ _builder_version=”3.25″ custom_padding=”|||” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.5.8″ text_font=”||||||||” text_line_height=”2em” ul_font=”||||||||” ol_font=”||||||||” header_font=”||||||||” header_2_font=”Faustina|600|||||||” header_2_font_size=”42px” header_2_line_height=”1.4em” header_3_font=”||||||||” header_4_font=”||||||||” header_5_font=”||||||||” header_6_font=”||||||||” text_orientation=”center” background_layout=”dark” max_width=”600px” module_alignment=”center” header_2_font_size_tablet=”32px” header_2_font_size_phone=”22px” header_2_font_size_last_edited=”on|desktop” locked=”off”]<\/p>\n

Entre em contacto. Envolver-se.<\/h2>\n

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Conhe\u00e7a Ashley-Jai (da Inglaterra, Reino Unido)INGL\u00caS Ashley-Jai \u00e9 um garoto de 9 anos muito gentil e curioso de uma pequena cidade no sudoeste da Inglaterra, no Reino Unido. Ele adora Thomas The Tank e uma de suas coisas favoritas \u00e9 passar o tempo ao ar livre em seu balan\u00e7o. Em maio de 2020, Ashley-Jai foi […]<\/p>\n","protected":false},"author":2,"featured_media":1848,"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-7459","page","type-page","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/pages\/7459","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/comments?post=7459"}],"version-history":[{"count":2,"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/pages\/7459\/revisions"}],"predecessor-version":[{"id":7461,"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/pages\/7459\/revisions\/7461"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/media\/1848"}],"wp:attachment":[{"href":"https:\/\/cureclcn4.org\/pt-br\/wp-json\/wp\/v2\/media?parent=7459"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}