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[\/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\/08\/Alia_1_grey_for_website.jpg” title_text=”Alia_1_grey_for_website” align=”center” _builder_version=”4.9.10″ _module_preset=”default” width=”95%”][\/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\/08\/Alia_2_grey_for_website.jpg” title_text=”Alia_2_grey_for_website” align=”center” _builder_version=”4.9.10″ _module_preset=”default”][\/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=”1397.6px” custom_padding=”0px|80px|36px|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
Ciao a tutti, Vorremmo presentarti la nostra ragazza Alia, che ha 4 anni e mezzo. \u00c8 nata nel febbraio 2017, 10 giorni prima della data prevista. Durante la gravidanza, Alia non \u00e8 cresciuta tanto quanto ci si aspettava e pesava solo 2,612 kg alla nascita. Alia ha pianto spesso durante i primi sei mesi, cosa che il medico ha attribuito alle coliche. Fin dalla nascita aveva strani movimenti delle gambe e potevamo vedere che era diversa dagli altri bambini. Quando Alia aveva 1 anno, il suo sviluppo si ferm\u00f2. Era molto difficile comunicare con lei, non giocava con gli altri bambini, viveva nel suo mondo, aveva sviluppato abitudini alimentari selettive e sentiva tutto con la bocca. Alia ha imparato a camminare solo quando aveva 2 anni, faceva solo alcuni rumori e non poteva parlare. Nel novembre 2019, ad Alia \u00e8 stato diagnosticato l’autismo infantile e la disabilit\u00e0 intellettuale. Nell’agosto 2020, sia Alia che noi, i suoi genitori, ci siamo sottoposti a test genetici che hanno rivelato che Alia ha una mutazione nel gene CLCN4. La mutazione si \u00e8 verificata in Alia stessa mentre era nel grembo materno; non \u00e8 qualcosa che ha ereditato geneticamente da noi. I medici ci hanno detto che c’erano solo altre 6 bambine al mondo con la stessa mutazione e quindi non potevano dirci molto al riguardo. Alia affronta molte sfide ogni giorno ed \u00e8 ancora molto difficile comunicare con lei. \u00c8 estroversa ma non pu\u00f2 ancora usare il linguaggio. Si fa del male da sola e quando \u00e8 in piedi, passa il 95% del tempo a camminare sulle dita dei piedi. Ha movimenti che assomigliano a spasmi e altre grandi sfide motorie, e non pu\u00f2 camminare molto lontano finch\u00e9 le sue gambe non possono fisicamente continuare. Ha la pica, il che significa che mangia assolutamente tutto, anche se non \u00e8 commestibile. Durante l’asilo mangia un sacco di sabbia, che le causa problemi di stomaco. Non possiamo pretendere nulla da Alia. Ha bisogno di una vita quotidiana molto strutturata e prevedibile, con tutto fatto preferibilmente a modo suo. Spesso vomita quando vede o annusa del cibo che non le piace. Trova anche molto impegnativo uscire in pubblico, quindi quando non \u00e8 al suo asilo speciale, passiamo molto tempo con lei a casa. Alia \u00e8 generalmente una ragazza molto felice e sorridente. Negli ultimi sei mesi, ha iniziato a cercare pi\u00f9 contatto e le piace che la abbracciamo e la baciamo, ma in modo un po’ brusco. Quando \u00e8 molto felice, agita le braccia ma quando \u00e8 triste o molto arrabbiata vomita e si colpisce in testa o colpisce e morde noi e i suoi fratelli. Alia ha bisogno di essere consapevole del proprio corpo e quindi spesso indossa un gilet calmante che le d\u00e0 un po’ pi\u00f9 di pace. Riesce a stare ferma solo se indossa il suo gilet calmante, altrimenti \u00e8 costantemente in movimento e irrequieta. Siamo molto preoccupati per il futuro di Alia, poich\u00e9 i medici non possono dirci nulla su questa sindrome. Speriamo di incontrare altre famiglie con cui condividere le nostre preoccupazioni e gioie. La condizione di Alia \u00e8 ancora un’enorme fonte di dolore per noi. Il nostro pi\u00f9 grande desiderio \u00e8 che il suo contatto e la sua comunicazione migliorino in modo da poterla aiutare e soddisfare i suoi bisogni nel miglior modo possibile. Lei \u00e8 il nostro piccolo raggio di sole. Xo xo Alia e la sua famiglia<\/p>\n
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Se vuoi sostenere Alia e altri bambini con CLCN4, considera di fare una donazione a Cure CLCN4. <\/strong><\/span>\u00a0<\/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=”Dona ora ” 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_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”]<\/p>\n [et_pb_divider show_divider=”off” _builder_version=”4.5.8″ _module_preset=”default”][\/et_pb_divider]<\/p>\n [\/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 [\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=”3.25″ background_color=”#ffffff” max_width=”850px” custom_padding=”60px|60px|60px|60px|true|true” animation_style=”slide” animation_direction=”top” animation_intensity_slide=”2%” 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=”850px”][et_pb_column type=”4_4″ _builder_version=”3.25″ custom_padding=”|||” custom_padding__hover=”|||”][et_pb_contact_form email=”info@cureclcn4.org” success_message=”Grazie per averci contattato. Ci metteremo presto in contatto.” module_id=”et_pb_contact_form_1″ _builder_version=”4.5.8″ form_field_background_color=”rgba(0,0,0,0)” form_field_font=”||||||||” custom_button=”on” button_text_size=”14px” button_text_color=”#ffffff” button_bg_color=”#26c699″ button_border_width=”8px” button_border_color=”rgba(0,0,0,0)” button_letter_spacing=”1px” button_font=”|700||on|||||” border_radii=”on|3px|3px|3px|3px” border_width_all=”1px” border_color_all=”rgba(51,51,51,0.15)” form_background_color=”rgba(0,0,0,0)”][et_pb_contact_field field_id=”Name” field_title=”Nome” _builder_version=”3.16″ button_text_size__hover_enabled=”off” button_one_text_size__hover_enabled=”off” button_two_text_size__hover_enabled=”off” button_text_color__hover_enabled=”off” button_one_text_color__hover_enabled=”off” button_two_text_color__hover_enabled=”off” button_border_width__hover_enabled=”off” button_one_border_width__hover_enabled=”off” button_two_border_width__hover_enabled=”off” 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custom_padding=”|||” custom_padding__hover=”|||”]<\/p>\n [et_pb_social_media_follow _builder_version=”4.9.4″ text_orientation=”center” custom_margin=”|||||true” border_radii=”on|40px|40px|40px|40px” locked=”off”][et_pb_social_media_follow_network social_network=”facebook” url=”https:\/\/www.facebook.com\/CureCLCN4″ _builder_version=”4.9.4″ background_color=”rgba(255,255,255,0.2)” custom_margin=”|6px||6px||true” custom_padding=”8px|8px|8px|8px|true|true” follow_button=”off” url_new_window=”on”]facebook[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=”linkedin” url=”https:\/\/uk.linkedin.com\/company\/cure-clcn4?trk=public_profile_experience-item_result-card_image-click” _builder_version=”4.5.8″ _module_preset=”default” background_color=”rgba(255,255,255,0.2)” custom_margin=”|6px||6px|false|false” custom_padding=”8px|8px|8px|8px|false|false” follow_button=”off” url_new_window=”on”]linkedin[\/et_pb_social_media_follow_network][\/et_pb_social_media_follow]<\/p>\n [\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":" Incontra Alia (dalla Danimarca)Ciao a tutti, Vorremmo presentarti la nostra ragazza Alia, che ha 4 anni e mezzo. \u00c8 nata nel febbraio 2017, 10 giorni prima della data prevista. Durante la gravidanza, Alia non \u00e8 cresciuta tanto quanto ci si aspettava e pesava solo 2,612 kg alla nascita. Alia ha pianto spesso durante i primi […]<\/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-2218","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/pages\/2218","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/comments?post=2218"}],"version-history":[{"count":5,"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/pages\/2218\/revisions"}],"predecessor-version":[{"id":3191,"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/pages\/2218\/revisions\/3191"}],"wp:attachment":[{"href":"https:\/\/cureclcn4.org\/it\/wp-json\/wp\/v2\/media?parent=2218"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}Mettiti in contatto. Fatti coinvolgere.<\/h2>\n