{"id":6543,"date":"2026-08-21T09:43:41","date_gmt":"2026-08-21T07:43:41","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=6543"},"modified":"2026-08-12T09:49:51","modified_gmt":"2026-08-12T07:49:51","slug":"vise-od-dijagnoze-price-ljudi-koji-zive-sa-spinalnom-misicnom-atrofijom-3","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/vise-od-dijagnoze-price-ljudi-koji-zive-sa-spinalnom-misicnom-atrofijom-3\/","title":{"rendered":"Vi\u0161e od dijagnoze: pri\u010de ljudi koji \u017eive sa spinalnom mi\u0161i\u0107nom atrofijom"},"content":{"rendered":"

Pri\u010da Ines i Doriana<\/strong><\/p>\n\n\n\n

Osmogodi\u0161nji Dorian je puno vi\u0161e od svoje dijagnoze. To je dje\u010dak koji voli igru, prijatelje, pjevanje, igrice i nove avanture. Najvi\u0161e u\u017eiva u jednostavnim trenucima \u2013 dru\u0161tvenim igrama, dobrom crti\u0107u, odlascima na bazen i vremenu provedenom s obitelji.<\/p>\n\n\n\n

Dorian \u017eivi sa spinalnom mi\u0161i\u0107nom atrofijom (SMA) tip 1, ali njegova dijagnoza ne mo\u017ee opisati tko je on zapravo. On je veseo, duhovit, znati\u017eeljan i pun \u017eivota. A njegova mama Ines ka\u017ee da je on prije svega \u2013 jedan veliki osmijeh.<\/p>\n\n\n\n

Jedan trenutak posebno joj je ostao u pam\u0107enju. Na njegov 8. ro\u0111endan prijateljica mu je rekla da mo\u017eda ne\u0107e sti\u0107i jer mu jo\u0161 nije kupila poklon. Dorian joj je odgovorio:<\/p>\n\n\n\n

\u201eNema veze, meni je najva\u017enije da ti do\u0111e\u0161.\u201c<\/p>\n\n\n\n

U toj je re\u010denici Ines prepoznala ono \u0161to joj Dorian svakodnevno pokazuje \u2013 da su ljudi koje volimo va\u017eniji od stvari i da su najvrjedniji trenuci \u010desto oni najjednostavniji \u2013 razgovor, smijeh, igra i vrijeme provedeno zajedno.<\/p>\n\n\n\n

SMA mo\u017ee biti svakodnevna borba. Ali ona je i hrabrost, upornost, ljubav i snaga. U Mjesecu svjesnosti o SMA va\u017eno je govoriti, u\u010diti i pitati kako bismo bolje razumjeli. Jer podr\u0161ka mijenja sve, a svatko ima pravo na dostojanstven, ispunjen i uklju\u010den \u017eivot.<\/p>\n\n\n\n

SMA je dio Dorianove pri\u010de. Ali nikada nije cijela njegova pri\u010da. Upoznajte Doriana kroz pri\u010du njegove mame Ines i upoznajte dje\u010daka iza ove bolesti \u2013 sa svim njegovim \u017eeljama, snovima, osobno\u0161\u0107u i malim i velikim \u017eivotnim pobjedama.<\/p>\n\n\n\n

Budu\u0107nost se ne podrazumijeva. Zato je va\u017eno o njoj govoriti.<\/p>\n\n\n\n

#MjesecSMA #SMA #SpinalnaMi\u0161i\u0107naAtrofija<\/p>\n\n\n

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Pri\u010da Ines i Doriana Osmogodi\u0161nji Dorian je puno vi\u0161e od svoje dijagnoze. To je dje\u010dak koji voli igru, prijatelje, pjevanje, igrice i nove avanture. Najvi\u0161e u\u017eiva u jednostavnim trenucima \u2013 dru\u0161tvenim igrama, dobrom crti\u0107u, odlascima na bazen i vremenu provedenom s obitelji. Dorian \u017eivi sa…<\/p>","protected":false},"author":3,"featured_media":6544,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"content-type":"","footnotes":""},"categories":[34],"tags":[],"class_list":["post-6543","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rijetka-infoteka"],"yoast_head":"\nVi\u0161e od dijagnoze: pri\u010de ljudi koji \u017eive sa spinalnom mi\u0161i\u0107nom atrofijom - Hrvatski savez za rijetke bolesti<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/rijetke-bolesti.com\/en\/vise-od-dijagnoze-price-ljudi-koji-zive-sa-spinalnom-misicnom-atrofijom-3\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Vi\u0161e od dijagnoze: pri\u010de ljudi koji \u017eive sa spinalnom mi\u0161i\u0107nom atrofijom - Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"og:description\" content=\"Pri\u010da Ines i Doriana Osmogodi\u0161nji Dorian je puno vi\u0161e od svoje dijagnoze. To je dje\u010dak koji voli igru, prijatelje, pjevanje, igrice i nove avanture. Najvi\u0161e u\u017eiva u jednostavnim trenucima \u2013 dru\u0161tvenim igrama, dobrom crti\u0107u, odlascima na bazen i vremenu provedenom s obitelji. Dorian \u017eivi sa...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/rijetke-bolesti.com\/en\/vise-od-dijagnoze-price-ljudi-koji-zive-sa-spinalnom-misicnom-atrofijom-3\/\" \/>\n<meta property=\"og:site_name\" content=\"Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"article:published_time\" content=\"2026-08-21T07:43:41+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/08\/glavna-fotka-2.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1122\" \/>\n\t<meta property=\"og:image:height\" content=\"572\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"sara\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"sara\" \/>\n\t<meta name=\"twitter:label2\" content=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/rijetke-bolesti.com\/vise-od-dijagnoze-price-ljudi-koji-zive-sa-spinalnom-misicnom-atrofijom-3\/\",\"url\":\"https:\/\/rijetke-bolesti.com\/vise-od-dijagnoze-price-ljudi-koji-zive-sa-spinalnom-misicnom-atrofijom-3\/\",\"name\":\"Vi\u0161e od dijagnoze: pri\u010de ljudi koji \u017eive sa spinalnom mi\u0161i\u0107nom atrofijom - 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