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[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ custom_padding_last_edited=”on|desktop” disabled_on=”off|off|off” _builder_version=”4.20.4″ _module_preset=”default” background_color=”#FFFFFF” width=”80%” width_tablet=”80%” width_phone=”100%” width_last_edited=”on|phone” max_width=”1080px” module_alignment=”center” custom_margin=”-50px||||false|false” custom_margin_tablet=”-50px||||false|false” custom_margin_phone=”20px||||false|false” custom_margin_last_edited=”on|phone” custom_padding=”||50px||false|false” custom_padding_tablet=”||||false|false” custom_padding_phone=”0px||0px||false|false” box_shadow_style=”preset1″ box_shadow_color_tablet=”” box_shadow_color_phone=”rgba(0,0,0,0)” box_shadow_color_last_edited=”on|phone” global_colors_info=”{}”][et_pb_row column_structure=”1_2,1_2″ make_equal=”on” custom_padding_last_edited=”on|desktop” _builder_version=”4.20.4″ _module_preset=”default” width_tablet=”” width_phone=”90%” width_last_edited=”on|phone” custom_margin=”0px||||false|false” custom_padding=”0px||0px||false|false” custom_padding_tablet=”” custom_padding_phone=”0px||0px||false|false” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.19.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text admin_label=”Diana about her daughter Natalya” _builder_version=”4.20.4″ text_font=”Montserrat|500||on|||||” text_text_color=”#353740″ text_font_size=”16px” text_letter_spacing=”3px” custom_margin=”||20px||false|false” custom_padding=”||||false|false” animation_direction=”bottom” locked=”off” global_colors_info=”{}”]Diana about her daughter Natalya[\/et_pb_text][et_pb_divider color=”#E02B20″ divider_weight=”3px” _builder_version=”4.20.2″ _module_preset=”default” max_width=”60px” custom_margin=”||15px||false|false” global_colors_info=”{}”][\/et_pb_divider][et_pb_image src=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/03\/natalya-ft-img-400×250-1.jpg” title_text=”natalya-ft-img-400×250″ disabled_on=”off|on|on” _builder_version=”4.20.4″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.20.4″ _module_preset=”default” background_enable_image=”off” background_position=”top_center” global_colors_info=”{}”][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ make_equal=”on” custom_padding_last_edited=”on|phone” _builder_version=”4.20.4″ _module_preset=”default” background_enable_color=”off” background_enable_image=”off” width=”100%” width_tablet=”” width_phone=”100%” width_last_edited=”on|phone” max_width=”100%” custom_margin=”0px||0px||false|false” custom_padding=”0px|10%|0px|10%|false|false” custom_padding_tablet=”0px|10%|0px|10%|false|false” custom_padding_phone=”|5%||5%|false|false” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.19.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.20.4″ text_font=”Montserrat||||” text_text_color=”#747d88″ text_line_height=”1.8em” link_font=”|700|||||||” link_text_color=”#0d4b7e” header_font=”||||||||” header_3_font_size=”18px” text_orientation=”justified” custom_margin=”||||false|false” custom_padding=”||||false|false” animation_direction=”top” text_font_size_tablet=”” text_font_size_phone=”16px” text_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}”]<\/p>\n
Natalya Rose was born on April 10, 2009. We got the diagnosis of PHIP related disorder \/ Chung-Jansen syndrome just a few years ago. Natalya has struggled her whole life having different kinds of psychological and physical problems, such as:<\/p>\n
[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.20.4″ _module_preset=”default” background_enable_image=”off” global_colors_info=”{}”][et_pb_image src=”https:\/\/chungjansensyndrome.eu\/wp-content\/uploads\/2023\/03\/natalya-ft-img-400×250-1.jpg” title_text=”natalya-ft-img-400×250″ disabled_on=”on|off|off” _builder_version=”4.20.4″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”1_2,1_2″ make_equal=”on” custom_padding_last_edited=”on|phone” _builder_version=”4.20.4″ _module_preset=”default” background_enable_color=”off” background_enable_image=”off” width=”100%” width_tablet=”” width_phone=”100%” width_last_edited=”on|phone” max_width=”100%” custom_margin=”0px||0px||false|false” custom_padding=”0px|10%|0px|10%|false|false” custom_padding_tablet=”0px|10%|0px|10%|false|false” custom_padding_phone=”|5%||5%|false|false” global_colors_info=”{}”][et_pb_column type=”1_2″ _builder_version=”4.19.5″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.20.4″ text_font=”Montserrat||||” text_text_color=”#747d88″ text_line_height=”1.8em” link_font=”|700|||||||” link_text_color=”#0d4b7e” header_font=”||||||||” header_3_font_size=”18px” text_orientation=”justified” custom_margin=”||||false|false” custom_padding=”||||false|false” animation_direction=”top” hover_enabled=”0″ text_font_size_tablet=”” text_font_size_phone=”16px” text_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n
When you look at Natalya, you don\u2019t initially notice a disability. That\u2019s what makes this rare disorder quite complex. However her violent behaviors have increased throughout the years, creating a domino effect of additional issues. <\/p>\n
She now has a team of Drs at Nemours, multiple therapists assisting her 40+ hours a week, and amazing teachers helping her make progress at school. While it\u2019s taken years to build our village, it has been incredibly impactful. <\/p>\n
[\/et_pb_text][\/et_pb_column][et_pb_column type=”1_2″ _builder_version=”4.20.4″ _module_preset=”default” background_enable_image=”off” global_colors_info=”{}”][et_pb_text _builder_version=”4.20.4″ text_font=”Montserrat||||” text_text_color=”#747d88″ text_line_height=”1.8em” link_font=”|700|||||||” link_text_color=”#0d4b7e” header_font=”||||||||” header_3_font_size=”18px” text_orientation=”justified” custom_margin=”||||false|false” custom_padding=”||||false|false” animation_direction=”top” hover_enabled=”0″ text_font_size_tablet=”” text_font_size_phone=”16px” text_font_size_last_edited=”on|phone” locked=”off” global_colors_info=”{}” sticky_enabled=”0″]<\/p>\n
Finding the right support systems and advocating is essential. This is a day to day, hour to hour, minute to minute struggle, however finding the silver linings is invaluable.<\/p>\n
Natalya has a big heart. She loves helping and caring for others. She also loves anything that relates to art and music. Not knowing what her future will be like is scary, but knowing that she advocates for herself is music to our soul !<\/p>\n
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Natalya Rose was born on April 10, 2009 . We got the diagnosis of PHIP related disorder \/ Chung-Jansen syndrome just a few years ago. Natalya has struggled her whole life having different kinds of psychological and physical problems.<\/p>\n","protected":false},"author":1,"featured_media":2143,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[39],"tags":[],"class_list":["post-2140","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-stories-en"],"_links":{"self":[{"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/posts\/2140","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/comments?post=2140"}],"version-history":[{"count":29,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/posts\/2140\/revisions"}],"predecessor-version":[{"id":208033,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/posts\/2140\/revisions\/208033"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/media\/2143"}],"wp:attachment":[{"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/media?parent=2140"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/categories?post=2140"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/chungjansensyndrome.eu\/en\/wp-json\/wp\/v2\/tags?post=2140"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}