{"id":1994,"date":"2026-08-15T08:58:17","date_gmt":"2026-08-15T08:58:17","guid":{"rendered":"https:\/\/curetaok1.org\/?page_id=1994"},"modified":"2026-08-15T10:02:07","modified_gmt":"2026-08-15T10:02:07","slug":"elementor-1994","status":"publish","type":"page","link":"https:\/\/curetaok1.org\/?page_id=1994","title":{"rendered":"Pola"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"1994\" class=\"elementor elementor-1994\" data-elementor-post-type=\"page\">\n\t\t\t\t<div class=\"elementor-element elementor-element-container_i0m42qfin e-con-full e-flex e-con e-parent\" data-id=\"container_i0m42qfin\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t<div class=\"elementor-element elementor-element-container_ogyrkt63y e-flex e-con-boxed e-con e-child\" data-id=\"container_ogyrkt63y\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-container_g49pgvpav e-con-full e-flex e-con e-child\" data-id=\"container_g49pgvpav\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_8535ldlx2 elementor-widget elementor-widget-image\" data-id=\"widget_8535ldlx2\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"1472\" height=\"1908\" src=\"https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-01.webp\" class=\"attachment-full size-full wp-image-2000\" alt=\"\" srcset=\"https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-01.webp 1472w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-01-231x300.webp 231w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-01-790x1024.webp 790w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-01-768x995.webp 768w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-01-1185x1536.webp 1185w\" sizes=\"(max-width: 1472px) 100vw, 1472px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-container_n2n8d4xqw e-con-full e-flex e-con e-child\" data-id=\"container_n2n8d4xqw\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_ymshz4mav elementor-widget elementor-widget-heading\" data-id=\"widget_ymshz4mav\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">Pola<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_6n72nfcx5 elementor-widget elementor-widget-heading\" data-id=\"widget_6n72nfcx5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">2 Years Old  \u2022  Poland<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_xqax82wvy elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"widget_xqax82wvy\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_ny8ng02u4 elementor-widget elementor-widget-text-editor\" data-id=\"widget_ny8ng02u4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>Diagnosed with an extremely rare de novo TAOK1 variant at just five months old, Pola inspires us daily with her joy of life. This profile is a space to share her milestones, her therapy journey, and our family&#8217;s part in the collective effort to fund research toward a treatment.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_wm44qz95d elementor-icon-list--layout-traditional elementor-list-item-link-full_width elementor-widget elementor-widget-icon-list\" data-id=\"widget_wm44qz95d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-list.default\">\n\t\t\t\t\t\t\t<ul class=\"elementor-icon-list-items\">\n\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-dna\" viewBox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M.1 494.1c-1.1 9.5 6.3 17.8 15.9 17.8l32.3.1c8.1 0 14.9-5.9 16-13.9.7-4.9 1.8-11.1 3.4-18.1H380c1.6 6.9 2.9 13.2 3.5 18.1 1.1 8 7.9 14 16 13.9l32.3-.1c9.6 0 17.1-8.3 15.9-17.8-4.6-37.9-25.6-129-118.9-207.7-17.6 12.4-37.1 24.2-58.5 35.4 6.2 4.6 11.4 9.4 17 14.2H159.7c21.3-18.1 47-35.6 78.7-51.4C410.5 199.1 442.1 65.8 447.9 17.9 449 8.4 441.6.1 432 .1L399.6 0c-8.1 0-14.9 5.9-16 13.9-.7 4.9-1.8 11.1-3.4 18.1H67.8c-1.6-7-2.7-13.1-3.4-18.1-1.1-8-7.9-14-16-13.9L16.1.1C6.5.1-1 8.4.1 17.9 5.3 60.8 31.4 171.8 160 256 31.5 340.2 5.3 451.2.1 494.1zM224 219.6c-25.1-13.7-46.4-28.4-64.3-43.6h128.5c-17.8 15.2-39.1 30-64.2 43.6zM355.1 96c-5.8 10.4-12.8 21.1-21 32H114c-8.3-10.9-15.3-21.6-21-32h262.1zM92.9 416c5.8-10.4 12.8-21.1 21-32h219.4c8.3 10.9 15.4 21.6 21.2 32H92.9z\"><\/path><\/svg>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">Condition: TAOK1-Associated Neurodevelopmental Disorder<\/span>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t\t\t<li class=\"elementor-icon-list-item\">\n\t\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-icon\">\n\t\t\t\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-star\" viewBox=\"0 0 576 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M259.3 17.8L194 150.2 47.9 171.5c-26.2 3.8-36.7 36.1-17.7 54.6l105.7 103-25 145.5c-4.5 26.3 23.2 46 46.4 33.7L288 439.6l130.7 68.7c23.2 12.2 50.9-7.4 46.4-33.7l-25-145.5 105.7-103c19-18.5 8.5-50.8-17.7-54.6L382 150.2 316.7 17.8c-11.7-23.6-45.6-23.9-57.4 0z\"><\/path><\/svg>\t\t\t\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t\t<span class=\"elementor-icon-list-text\">Key Focus: Physiotherapy &amp; Motor Development<\/span>\n\t\t\t\t\t\t\t\t\t<\/li>\n\t\t\t\t\t\t<\/ul>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_21h4euegt elementor-align-left elementor-widget elementor-widget-button\" data-id=\"widget_21h4euegt\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"#\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t<span class=\"elementor-button-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-heart\" viewBox=\"0 0 512 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M462.3 62.6C407.5 15.9 326 24.3 275.7 76.2L256 96.5l-19.7-20.3C186.1 24.3 104.5 15.9 49.7 62.6c-62.8 53.6-66.1 149.8-9.9 207.9l193.5 199.8c12.5 12.9 32.8 12.9 45.3 0l193.5-199.8c56.3-58.1 53-154.3-9.8-207.9z\"><\/path><\/svg>\t\t\t<\/span>\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Support Pola's Journey<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-container_hjhwkznd5 e-con-full e-flex e-con e-parent\" data-id=\"container_hjhwkznd5\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t<div class=\"elementor-element elementor-element-container_jj6n81p8p e-flex e-con-boxed e-con e-child\" data-id=\"container_jj6n81p8p\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_runmg5nwl elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"widget_runmg5nwl\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-heart\" viewBox=\"0 0 512 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M462.3 62.6C407.5 15.9 326 24.3 275.7 76.2L256 96.5l-19.7-20.3C186.1 24.3 104.5 15.9 49.7 62.6c-62.8 53.6-66.1 149.8-9.9 207.9l193.5 199.8c12.5 12.9 32.8 12.9 45.3 0l193.5-199.8c56.3-58.1 53-154.3-9.8-207.9z\"><\/path><\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_fiua9bp1e elementor-widget elementor-widget-heading\" data-id=\"widget_fiua9bp1e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Pola from Poland<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_go2x0zmz0 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"widget_go2x0zmz0\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_o2gxhg594 elementor-widget elementor-widget-text-editor\" data-id=\"widget_o2gxhg594\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p class=\"font-claude-response-body break-words whitespace-normal\" dir=\"ltr\" data-sourcepos=\"3:1-3:655;16-670\">Pola was diagnosed when she was five months old. The first signal that worried us and the doctors was her head \u2014 larger than the growth charts suggested. Even before we knew the diagnosis, Pola was already &#8220;in training&#8221;: from her third week of life, we were taking her to rehabilitation, first to an osteopath, then to a physiotherapist. After several visits to different doctors, we were referred for WES testing \u2014 and that gave us the answer: TAOK1, a de novo variant. To this day, we remember the feeling of seeing that name for the first time. Back then, it meant nothing to us. Today, it is part of our lives \u2014 and the reason this foundation exists.<\/p><p class=\"font-claude-response-body break-words whitespace-normal\" dir=\"ltr\" data-sourcepos=\"5:1-5:298;672-969\">Pola&#8217;s variant is extremely rare even by the standards of this condition \u2014 it affects a non-coding part of the gene. That sounds very scientific, but on a daily basis Pola effectively reminds us that a diagnosis is just one of many things we know about her \u2014 and not the most important one at all.<\/p><p class=\"font-claude-response-body break-words whitespace-normal\" dir=\"ltr\" data-sourcepos=\"7:1-7:642;971-1612\">Because Pola is, above all, an incredibly cheerful, sunny, and clever child. She is intelligent and inventive, she talks a lot, and her intellectual development is right on track. Pola&#8217;s biggest challenge is motor development: because of her larger head and reduced muscle tone, she reaches every motor milestone with more effort than her peers. But she does reach them \u2014 step by step, on her own terms, with a determination that sometimes puts us to shame. Her second challenge is nutrition: Pola has a histamine allergy, and gluten and dairy are excluded from her diet as well. Planning her meals is a form of advanced household logistics.<\/p><p class=\"font-claude-response-body break-words whitespace-normal\" dir=\"ltr\" data-sourcepos=\"9:1-9:373;1614-1986\">And what fills Pola&#8217;s days? At the moment, the undisputed leaders in her ranking of favorite activities are Hot Wheels cars, play dough, and helping with household chores \u2014 vacuuming with Pola takes longer, but it is definitely more fun. Everyone around her loves her for one thing: an incredible joy of life that she passes on to anyone who spends even a moment with her.<\/p><p>\n\n\n\n\n\n\n\n<\/p><p class=\"font-claude-response-body break-words whitespace-normal\" dir=\"ltr\" data-sourcepos=\"11:1-11:196;1988-2183\">It is for Pola \u2014 and for all children like her \u2014 that we do what we do. If you are reading this story because your child has just received a similar diagnosis: you are not alone. Reach out to us.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_dtvyiyinh elementor-widget elementor-widget-text-editor\" data-id=\"widget_dtvyiyinh\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\tTheir path is not defined by milestones on a typical chart, but by profound moments of deep connection, pure resilience, and unconditional love. Every small victory is celebrated like a grand triumph\u2014a new purposeful gesture, a sustained warm gaze, or a soft laugh that fills the entire room with light. Through therapies and clinical visits, their gentle spirit remains completely untouched, teaching everyone they meet the true meaning of patience and strength.\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_ae3s520jf elementor-widget elementor-widget-text-editor\" data-id=\"widget_ae3s520jf\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\tLooking ahead, we walk this path with immense hope and a deep commitment to raising awareness for CureTAOK1. Our child\u2019s peaceful nature is a constant, beautiful reminder that life&#8217;s most meaningful melodies are often played softly. We are endlessly proud of the bright light they carry within, and we invite you to stand with us in fostering a world where every child on this journey is seen, deeply valued, and embraced for the unique gift they are.\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-container_x0o41tgjg e-flex e-con-boxed e-con e-parent\" data-id=\"container_x0o41tgjg\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-container_q0jgqbh9c e-con-full e-flex e-con e-child\" data-id=\"container_q0jgqbh9c\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_85ee276b3 elementor-widget elementor-widget-heading\" data-id=\"widget_85ee276b3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Moments of Joy &amp; Hope<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-container_78iav2hvl e-grid e-con-full e-con e-child\" data-id=\"container_78iav2hvl\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t<div class=\"elementor-element elementor-element-container_xzpjvcsmr e-con-full e-flex e-con e-child\" data-id=\"container_xzpjvcsmr\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_vp0fh6r8g elementor-widget elementor-widget-image\" data-id=\"widget_vp0fh6r8g\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"1472\" height=\"1908\" src=\"https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-02.webp\" class=\"attachment-full size-full wp-image-2001\" alt=\"\" srcset=\"https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-02.webp 1472w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-02-231x300.webp 231w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-02-790x1024.webp 790w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-02-768x995.webp 768w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-02-1185x1536.webp 1185w\" sizes=\"(max-width: 1472px) 100vw, 1472px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-container_ku3icc2tp e-con-full e-flex e-con e-child\" data-id=\"container_ku3icc2tp\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_jhyyho90j elementor-widget elementor-widget-image\" data-id=\"widget_jhyyho90j\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"1472\" height=\"1908\" src=\"https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-03.webp\" class=\"attachment-full size-full wp-image-2002\" alt=\"\" srcset=\"https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-03.webp 1472w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-03-231x300.webp 231w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-03-790x1024.webp 790w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-03-768x995.webp 768w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-03-1185x1536.webp 1185w\" sizes=\"(max-width: 1472px) 100vw, 1472px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-container_dzroo5twk e-con-full e-flex e-con e-child\" data-id=\"container_dzroo5twk\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-widget_7jvt6xc98 elementor-widget elementor-widget-image\" data-id=\"widget_7jvt6xc98\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"1472\" height=\"1908\" src=\"https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-04.png\" class=\"attachment-full size-full wp-image-2022\" alt=\"\" srcset=\"https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-04.png 1472w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-04-231x300.png 231w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-04-790x1024.png 790w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-04-768x995.png 768w, https:\/\/curetaok1.org\/wp-content\/uploads\/2026\/08\/Pola-04-1185x1536.png 1185w\" sizes=\"(max-width: 1472px) 100vw, 1472px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Pola 2 Years Old \u2022 Poland Diagnosed with an extremely rare de novo TAOK1 variant at just five months old, Pola inspires us daily with her joy of life. This profile is a space to share her milestones, her therapy journey, and our family&#8217;s part in the collective effort to fund research toward a treatment. 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