{"id":1152,"date":"2017-12-10T18:00:00","date_gmt":"2017-12-10T20:00:00","guid":{"rendered":"https:\/\/www.silutesnaujienos.lt\/lt\/reti-apsigimimai-silutiskei-viktorijai-ir-jos-seimai-padovanojo-didele-stiprybe\/"},"modified":"2017-12-10T18:00:00","modified_gmt":"2017-12-10T20:00:00","slug":"reti-apsigimimai-silutiskei-viktorijai-ir-jos-seimai-padovanojo-didele-stiprybe","status":"publish","type":"post","link":"https:\/\/www.silutesnaujienos.lt\/lt\/reti-apsigimimai-silutiskei-viktorijai-ir-jos-seimai-padovanojo-didele-stiprybe\/","title":{"rendered":"Reti apsigimimai \u0161iluti\u0161kei Viktorijai ir jos \u0161eimai padovanojo didel\u0119 stipryb\u0119"},"content":{"rendered":"<p><a href=\"\/\/silutesnaujienos.lt\/images\/stories\/2017\/12\/05\/Viktorija_maciulyte_ccc.jpg\" class=\"jcepopup\" rel=\"caption[21-eri\u0173 \u0161iluti\u0161k\u0117 tiki, kad visi ne\u0161ame savo \u201ekry\u017eelius\u201c.] noopener noreferrer\" target=\"_blank\" data-rel=\"lightbox-gallery-gzkHAfoE\" data-rl_title=\"\" data-rl_caption=\"\"><img loading=\"lazy\" decoding=\"async\" src=\"\/\/silutesnaujienos.lt\/images\/stories\/2017\/12\/05\/thumbnails\/thumb_Viktorija_maciulyte_ccc.jpg\" alt=\"Viktorija maciulyte_ccc\" title=\"\" class=\"caption\" style=\"margin: 5px; float: left;\" height=\"230\" width=\"307\" \/><\/a><strong>\u201eDievas neskiria \u017emogui to, ko jis negali i\u0161tverti\u201c, &#8211; sako \u0161iluti\u0161k\u0117 Viktorija Ma\u010diulyt\u0117. Atvirai pasakodama apie sav\u0105j\u012f likim\u0105, 21-eri\u0173 mergina, gimusi su labai retais apsigimim\u0173 sindromais, neslepia emocij\u0173 &#8211; m\u016bs\u0173 nuo\u0161irdus pokalbis apipintas ir \u0161ypsenomis, ir a\u0161aromis. <br \/><\/strong><br \/><strong>Vis d\u0117lto, paklausta, ko d\u0117l savo negalios ji gyvenime tur\u0117jo atsisakyti, Viktorija \u0161velniai nusi\u0161ypso ir sako: \u201eNieko. Na, gal negaliu greitai b\u0117gioti ar \u0161okti scenoje. O visa kita &#8211; pasiekiama.\u201c<br \/><\/strong><br \/><strong>Ir tik ilgiau kalbantis atsiveria, jog tam jai ir jos artimiesiems nuo pat prad\u017ei\u0173 reik\u0117jo d\u0117ti daug fizini\u0173 pastang\u0173, tur\u0117ti valios ir kantryb\u0117s.<\/strong><strong><br \/><\/strong><br \/><strong>Likimas skyr\u0117 labai retus apsigimimus<br \/><\/strong><br \/>Viktorijos gyvenimo kelias nelengvas. Pa\u0161nekov\u0117 atvirauja, kad, kai ji gim\u0117, jos mamai gydytojai pasak\u0117 negailesting\u0105 diagnoz\u0119: k\u016bdikis ilgai negyvens. Rodos, kitaip ir b\u016bti negal\u0117jo &#8211; gimusi septint\u0105j\u012f n\u0117\u0161tumo m\u0117nes\u012f mergait\u0117 \u012f pasaul\u012f at\u0117jo su daugybe apsigimim\u0173. Vienas i\u0161 j\u0173 &#8211; Arnoldo-Chiari sindromas (Arnold-Chiari anomalija). Tai \u012fgimta smegen\u0173 vystymosi patologija. Da\u017enai d\u0117l \u0161io sindromo esantis defektas smegenyse yra susij\u0119s su vystymosi sutrikimais nugaros smegenyse. Arnoldo-Chiari anomalijos da\u017enis yra 3-8 \u017emon\u0117s i\u0161 100 000 gyventoj\u0173. <\/p>\n<p>Antrasis sindromas, kuris nustatytas vos gimusiai Viktorijai &#8211; Klippel-Feil. Tai \u012fgimtas stuburo i\u0161sigimimas. B\u016bdingi jo po\u017eymiai &#8211; kaklo slanksteli\u0173 deformacijos (sutrumpinimas) arba suaugimas. D\u0117l \u0161io sindromo mergina turi silpnesn\u0119 kairiaj\u0105j\u0105 k\u016bno dal\u012f, trumpesn\u0119 koj\u0105. <\/p>\n<p>Bendrai sud\u0117jus visas negalias, pa\u0161nekov\u0117 dar gim\u0117 su labai silpnu reg\u0117jimu, \u017evairumu, \u0161leivap\u0117dyste ir nei\u0161sivys\u010diusiu vienu plau\u010diu. <\/p>\n<p>Anot Viktorijos, vis d\u0117lto, nepaisant gydytoj\u0173 diagnoz\u0117s, ji \u0161iandien gyva. Ir ne tik gyva, bet labai laiminga, mylima ir mylinti. <\/p>\n<p><strong>Kova su negalia ir prognoz\u0117mis<\/strong> <\/p>\n<p>\u201eMane, vos gimusi\u0105, vis\u0105 sugipsavo. Matyt tod\u0117l, kad k\u016bnelis buvo labai silpnas. V\u0117liau t\u0117vai ne tik i\u0161girdo prognoz\u0119, kad ilgai negyvensiu, bet ir kad nevaik\u0161\u010diosiu\u201c, &#8211; pasakoja Viktorija. <\/p>\n<p>Nors \u0161eima tuo metu gyveno finansi\u0161kai sud\u0117tingai, tai nesutrukd\u0117 visiems susivienyti ir kovoti su pirmagim\u0117s sunkiomis ligomis. Pa\u0161nekov\u0117 su did\u017eiule pagarba pasakoja, jog vienas did\u017eiausi\u0173 jos pagalbinink\u0173 buvo t\u0117tis Ar\u016bnas. B\u016btent jis mergait\u0119, dar ma\u017e\u0105 mank\u0161tino, masa\u017eavo, stiprino jai raumenis. Mama Oksana buvo geriausia vidini\u0173 jausm\u0173, sunki\u0173 i\u0161gyvenim\u0173 draug\u0117. <\/p>\n<p>Po pirm\u0173j\u0173 atkakli\u0173 pastang\u0173, kai Viktorijai buvo gal du su puse metuk\u0173, ji \u017eeng\u0117 pirmuosius \u017eingsnius savo kojomis. Tai buvo did\u017eiausias stebuklas. Mama Oksana atsimena, kaip tuomet savo dukter\u012f nuved\u0117 ap\u017ei\u016brai \u012f \u0160ilut\u0119 atvykusiems gydytojams i\u0161 Klaip\u0117dos. \u0160ie \u012f vaik\u0105 \u017ei\u016br\u0117jo nesl\u0117pdami nuostabos, netik\u0117dami savo akimis, kad mergait\u0117, tur\u0117dama tokius apsigimimus, vis d\u0117lto vaik\u0161to. Jie tai net \u012fam\u017eino vaizdo med\u017eiagoje, kad gal\u0117t\u0173 pasidalinti su kolegomis.<\/p>\n<p>\u201eNors vaik\u0161\u010dioti Viktorija prad\u0117jo gana v\u0117lai, ta\u010diau buvo tikra \u0161liau\u017eimo \u010dempion\u0117. Vadindavome j\u0105 \u201eraliste\u201c, greitai sugeban\u010dia \u0161liau\u017eiant atsidurti norimoje vietoje\u201c, &#8211; prisiminimais linksmai dalijasi mama.<\/p>\n<p><strong>Kitokia vaikyst\u0117<a href=\"\/\/silutesnaujienos.lt\/images\/stories\/2017\/12\/05\/Viktorija_maciulyte_ccc_1.jpg\" class=\"jcepopup\" rel=\"caption[ \u012esimintina \u0161eimos akimirka - ses\u0117s pirmosios komunijos diena. Viktorija \u0161alia t\u0117\u010dio.] noopener noreferrer\" target=\"_blank\" data-rel=\"lightbox-gallery-gzkHAfoE\" data-rl_title=\"\" data-rl_caption=\"\"><img loading=\"lazy\" decoding=\"async\" src=\"\/\/silutesnaujienos.lt\/images\/stories\/2017\/12\/05\/thumbnails\/thumb_Viktorija_maciulyte_ccc_1.jpg\" alt=\"Viktorija maciulyte_ccc_1\" title=\"\" class=\"caption\" style=\"margin: 5px; float: right;\" height=\"230\" width=\"307\" \/><\/a><\/strong><\/p>\n<p>Pasakodama apie savo vaikyst\u0119, Viktorija sako, jog buvo labai judri mergait\u0117. Did\u017eioji jos vaikyst\u0117s dalis prab\u0117go kieme, \u017eaid\u017eiant su draugais. \u201eOi, buvau vis\u0173 vad\u0117, m\u0117gau duoti komandas, vadovauti\u201c, &#8211; \u0161ypsodamasi prisimena pa\u0161nekov\u0117.<\/p>\n<p>Visai kitas gyvenimo etapas prasid\u0117jo tuomet, kai jai reik\u0117jo eiti \u012f mokykl\u0105. \u010cia mergait\u0117s lauk\u0117 skaud\u016bs likimo kir\u010diai i\u0161 bendraklasi\u0173, bendraam\u017ei\u0173 l\u016bp\u0173. Paty\u010dios&#8230; Prisimindama pirmuosius kelerius metus mokykloje, Viktorija nesulaiko a\u0161ar\u0173, kurios geriausiai liudija, kaip skaudu, sunku tuomet buvo jos gle\u017enai \u0161irdelei. Kokius \u017eod\u017eius ji gird\u0117jo, k\u0105 sak\u0117 ir kaip j\u0105 pravard\u017eiavo vaikai, nekartosime. Bet jai buvo taip skaudu d\u0117l a\u0161tri\u0173, grubi\u0173 ir da\u017enai \u017eeminan\u010di\u0173 \u017eod\u017ei\u0173, kad tuomet buvusi judri kiemo mergai\u010diuk\u0117 \u0117m\u0117 g\u016b\u017etis \u012f savo nematom\u0105 kiaut\u0105. Tada ji ilgam u\u017esidar\u0117 savyje, atsitolino nuo bendraam\u017ei\u0173.<\/p>\n<p>\u201eNeturiu ir dabar draugi\u0173\u201c, &#8211; prisipa\u017e\u012fsta Viktorija. <\/p>\n<p>Pasakodama apie mokyklos laikus, ji prisimena vien\u0105 skaud\u017eiausi\u0173 i\u0161gyvenim\u0173 &#8211; kart\u0105 j\u0105, gr\u012f\u017etan\u010di\u0105 i\u0161 mokyklos, u\u017epuol\u0117. <\/p>\n<p>\u201eTikriausiai mane sek\u0117 toji mergait\u0117. Kai \u0117jau i\u0161 mokyklos, ji staiga i\u0161lindo i\u0161 u\u017e vieno namo kampo ir \u0117m\u0117 klausin\u0117ti, kod\u0117l a\u0161 taip atrodau, kod\u0117l taip vaik\u0161tau. Paskui ji mane nusitemp\u0117 \u012f atoki\u0105 viet\u0105 ir stipriai st\u016bm\u0117 \u012f akmenin\u0119 sien\u0105\u201c, &#8211; pasakoja Viktorija, dar nepamir\u0161usi, kaip t\u0105syk j\u0105 u\u017epuolik\u0117 prigr\u0105sino tyl\u0117ti, nes kitaip pa\u017ead\u0117jo u\u017emu\u0161ti. <\/p>\n<p>Ta\u010diau \u0161i istorija nepraslydo pro r\u016bpestingas Viktorijos mamos akis. Kai ji pamat\u0117 sugniu\u017edyt\u0105, i\u0161g\u0105sdint\u0105 ir apsiverkusi\u0105 savo dukr\u0105, tuoj pat visk\u0105 i\u0161siai\u0161kino. Taip u\u017epuolik\u0117 buvo priversta u\u017e savo poelgius bent jau atsipra\u0161yti. <\/p>\n<p>Skaudi istorija Viktorijai paliko nei\u0161dildomus i\u0161gyvenimus. Mergina d\u017eiaugiasi, kad toji skriaud\u0117ja tuomet mok\u0117si kitoje mokykloje ir j\u0173dviej\u0173 keliai daugiau nesusikirto.<\/p>\n<p><strong>Liga daug ko i\u0161mok\u0117<\/strong><\/p>\n<p>\u201eLiga gali atimti laisv\u0119 jud\u0117ti, matyti, gird\u0117ti, bet niekados neu\u017edraus myl\u0117ti\u201c, &#8211; sako Viktorija. Mergina labai vertina savo likim\u0105 ir neslepia jautri\u0173 i\u0161gyvenim\u0173. <\/p>\n<p>\u201eA\u0161 esu laiminga\u201c, &#8211; atvirauja pa\u0161nekov\u0117. Anot jos, kaip gyvenime beb\u016bdavo sunku, kaip besuspausdavo \u0161ird\u012f, ji visada prisimindavo mamos pasakytus \u017eod\u017eius, jog b\u016bna ir dar blogiau. Tai &#8211; aklumas, kurtumas, mirtinos ligos ir begal\u0117 kit\u0173 negand\u0173, kurios aplenk\u0117 \u0161iluti\u0161k\u0119. <br \/>Daug kas merginos gyvenime pasikeit\u0117 prie\u0161 metus. Tas laikas jai &#8211; ypatingas ir reik\u0161mingas.<\/p>\n<p>Viktorija tuomet, pasi\u016blius Darbo bir\u017eai, i\u0161vyko \u012f Palang\u0105 mokytis pagal speciali\u0105 ne\u012fgali\u0173j\u0173 program\u0105. \u010cia ji, nuo ma\u017e\u0173 dien\u0173 m\u0117gusi visokius rankdarbius, kruop\u0161\u010diai siuvin\u0117jusi kry\u017eeliu, pasirinko krimsti siuv\u0117jos amato paslaptis. <\/p>\n<p>Lankydama kursus, \u0161iluti\u0161k\u0117 susipa\u017eino su pana\u0161aus likimo vaikinu i\u0161 \u0160ilal\u0117s rajono. Tad \u0161iandien Viktorija turi \u0161irdies draug\u0105, daug laiko praleid\u017eia su juo, myli ir jau\u010diasi mylima.<\/p>\n<p>Pasakojant Viktorijos istorij\u0105 norisi d\u017eiaugtis. Nes ne visi atlaiko tokius likimo sm\u016bgius, ne visi b\u016bna apdovanoti tokia vieninga, stipria \u0161eima, kaip Viktorija. B\u016btent d\u0117l to m\u016bs\u0173 pa\u0161nekov\u0117 ir yra laiminga. Laiminga ir jos mama, laimingas t\u0117tis, jaun\u0117l\u0117 ses\u0117 Gabriel\u0117.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>\u201eDievas neskiria \u017emogui to, ko jis negali i\u0161tverti\u201c, &#8211; sako \u0161iluti\u0161k\u0117 Viktorija Ma\u010diulyt\u0117. Atvirai pasakodama apie sav\u0105j\u012f likim\u0105, 21-eri\u0173 mergina, gimusi su labai retais apsigimim\u0173 sindromais, neslepia emocij\u0173 &#8211; m\u016bs\u0173 nuo\u0161irdus pokalbis apipintas ir \u0161ypsenomis, ir a\u0161aromis. Vis d\u0117lto, paklausta, ko d\u0117l savo negalios ji gyvenime tur\u0117jo atsisakyti, Viktorija \u0161velniai nusi\u0161ypso ir sako: \u201eNieko. Na, [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[52],"tags":[],"class_list":["post-1152","post","type-post","status-publish","format-standard","category-gyvenimas"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Reti apsigimimai \u0161iluti\u0161kei Viktorijai ir jos \u0161eimai padovanojo didel\u0119 stipryb\u0119 - \u0160ilut\u0117s naujienos<\/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:\/\/www.silutesnaujienos.lt\/lt\/reti-apsigimimai-silutiskei-viktorijai-ir-jos-seimai-padovanojo-didele-stiprybe\/\" \/>\n<meta property=\"og:locale\" content=\"lt_LT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Reti apsigimimai \u0161iluti\u0161kei Viktorijai ir jos \u0161eimai padovanojo didel\u0119 stipryb\u0119 - \u0160ilut\u0117s naujienos\" \/>\n<meta property=\"og:description\" content=\"\u201eDievas neskiria \u017emogui to, ko jis negali i\u0161tverti\u201c, &#8211; sako \u0161iluti\u0161k\u0117 Viktorija Ma\u010diulyt\u0117. Atvirai pasakodama apie sav\u0105j\u012f likim\u0105, 21-eri\u0173 mergina, gimusi su labai retais apsigimim\u0173 sindromais, neslepia emocij\u0173 &#8211; m\u016bs\u0173 nuo\u0161irdus pokalbis apipintas ir \u0161ypsenomis, ir a\u0161aromis. Vis d\u0117lto, paklausta, ko d\u0117l savo negalios ji gyvenime tur\u0117jo atsisakyti, Viktorija \u0161velniai nusi\u0161ypso ir sako: \u201eNieko. 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