{"id":6561,"date":"2026-08-24T09:50:04","date_gmt":"2026-08-24T07:50:04","guid":{"rendered":"https:\/\/rijetke-bolesti.com\/?p=6561"},"modified":"2026-08-12T10:12:16","modified_gmt":"2026-08-12T08:12:16","slug":"vise-od-dijagnoze-price-ljudi-koji-zive-sa-spinalnom-misicnom-atrofijom-4","status":"publish","type":"post","link":"https:\/\/rijetke-bolesti.com\/en\/vise-od-dijagnoze-price-ljudi-koji-zive-sa-spinalnom-misicnom-atrofijom-4\/","title":{"rendered":"Vi\u0161e od dijagnoze: pri\u010de ljudi koji \u017eive sa spinalnom mi\u0161i\u0107nom atrofijom"},"content":{"rendered":"

Ivonina i Teina pri\u010da<\/strong><\/p>\n\n\n\n

\u201eTea nas svakodnevno podsje\u0107a da se \u017eivot ne mjeri onime \u0161to ne mo\u017eemo, ve\u0107 svim onim \u0161to mo\u017eemo i \u0161to tek mo\u017eemo posti\u0107i.\u201c<\/p>\n\n\n\n

Tea je vesela, posebna i jako uporna djevoj\u010dica. Voli pri\u010dati, \u0161aliti se, igrati igrice sa svojim prijateljem Dorianom i provoditi vrijeme sa svojim sestrama i obitelji. Otkako ima elektromotorna kolica, postala je jo\u0161 samostalnija \u2013 mo\u017ee oti\u0107i u park, u trgovinu i krenuti u svoje male svakodnevne avanture.<\/p>\n\n\n\n

Za njezinu mamu Ivonu, male pobjede su veliki trenuci. Kada vidi kako Tea provodi vrijeme sa svojim vr\u0161njacima i kako je prihva\u0107aju kao jednu od njih. Kada u \u0161koli nailazi na pa\u017enju i razumijevanje. Ili kada je pro\u0161le godine na bazenu nau\u010dila roniti. Njoj je to mo\u017eda bio samo jo\u0161 jedan novi korak, ali meni je to bila velika pobjeda i trenutak na koji sam bila jako ponosna, nagla\u0161ava mama Ivona.<\/p>\n\n\n\n

\u017divot sa spinalnom mi\u0161i\u0107nom atrofijom (SMA) \u010desto zna\u010di mnogo planiranja, organizacije i neizvjesnosti. Ali zna\u010di i strpljenje, zahvalnost za svaki zajedni\u010dki trenutak i spoznaju da se granice mogu pomaknuti. Tein \u017eivot nije samo SMA. On je ispunjen pri\u010dom, smijehom, igrom, obitelji, prijateljstvima i malim pobjedama koje postaju velike.<\/p>\n\n\n\n

U Mjesecu svjesnosti o SMA prisje\u0107amo se koliko je va\u017ena podr\u0161ka \u2013 obitelji, prijatelja i cijele zajednice. Jer kada razumijemo, prihva\u0107amo i pru\u017eamo podr\u0161ku, stvaramo dru\u0161tvo u kojem osobe koje \u017eive sa SMA mogu biti uklju\u010dene, ostvarivati svoje snove i \u017eivjeti \u017eivot ispunjen mogu\u0107nostima.<\/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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Ivonina i Teina pri\u010da \u201eTea nas svakodnevno podsje\u0107a da se \u017eivot ne mjeri onime \u0161to ne mo\u017eemo, ve\u0107 svim onim \u0161to mo\u017eemo i \u0161to tek mo\u017eemo posti\u0107i.\u201c Tea je vesela, posebna i jako uporna djevoj\u010dica. Voli pri\u010dati, \u0161aliti se, igrati igrice sa svojim prijateljem Dorianom…<\/p>","protected":false},"author":3,"featured_media":6564,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"content-type":"","footnotes":""},"categories":[34],"tags":[],"class_list":["post-6561","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-4\/\" \/>\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=\"Ivonina i Teina pri\u010da \u201eTea nas svakodnevno podsje\u0107a da se \u017eivot ne mjeri onime \u0161to ne mo\u017eemo, ve\u0107 svim onim \u0161to mo\u017eemo i \u0161to tek mo\u017eemo posti\u0107i.\u201c Tea je vesela, posebna i jako uporna djevoj\u010dica. Voli pri\u010dati, \u0161aliti se, igrati igrice sa svojim prijateljem Dorianom...\" \/>\n<meta property=\"og:url\" content=\"https:\/\/rijetke-bolesti.com\/en\/vise-od-dijagnoze-price-ljudi-koji-zive-sa-spinalnom-misicnom-atrofijom-4\/\" \/>\n<meta property=\"og:site_name\" content=\"Hrvatski savez za rijetke bolesti\" \/>\n<meta property=\"article:published_time\" content=\"2026-08-24T07:50:04+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/rijetke-bolesti.com\/wp-content\/uploads\/2026\/08\/glavna-fotka-3.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-4\/\",\"url\":\"https:\/\/rijetke-bolesti.com\/vise-od-dijagnoze-price-ljudi-koji-zive-sa-spinalnom-misicnom-atrofijom-4\/\",\"name\":\"Vi\u0161e od dijagnoze: pri\u010de ljudi koji \u017eive sa spinalnom mi\u0161i\u0107nom atrofijom - 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