{"id":6943,"date":"2024-02-21T07:01:13","date_gmt":"2024-02-21T06:01:13","guid":{"rendered":"https:\/\/ritamgrada.rs\/kragujevac\/?p=6943"},"modified":"2024-02-21T07:01:13","modified_gmt":"2024-02-21T06:01:13","slug":"maloj-janji-potrebna-pomoc-da-ode-na-lecenje-neophodno-jos-40-000-evra","status":"publish","type":"post","link":"https:\/\/ritamgrada.rs\/kragujevac\/maloj-janji-potrebna-pomoc-da-ode-na-lecenje-neophodno-jos-40-000-evra\/","title":{"rendered":"Maloj Janji potrebna pomo\u0107 da ode na le\u010denje – Neophodno jo\u0161 40.000 evra"},"content":{"rendered":"

\u0160estogodi\u0161nja Janja Stojanovi\u0107 iz Kragujevca nije obi\u010dna devoj\u010dica. Janja je medicinsko \u010dudo, borac koji se u ko\u0161tac uhvatio sa\u00a0smrtonosnom mutacijom gena<\/strong>. Jedina je osoba u Evropi sa promenom u genu koja za posledicu uglavnom ima fatalni ishod.<\/p>\n

Janja na samom ro\u0111enju nije disala dva minuta\u00a0zbog \u010dega je intubirana i preba\u010dena na odeljenje neonatologije, gde je u inkubatoru provela svojih prvih mesec dana.<\/p>\n

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Pored Jubertovog sindroma,\u00a0Janja ima i polidaktiliju (\u0161estoprstost) i ptozu desnog kapka, koju je operisala sa samo tri meseca.<\/strong><\/p>\n

Nakon ura\u0111ene magnetne rezonance glave u septembru 2019. godine uspostavljena je dijagnoza – Jubertov sindrom, odnosno nerazvijenost malog mozga i mo\u017edanog stabla.<\/strong><\/p>\n

Genetska analiza pokazala je udru\u017eeni heterozigot patogenih varijanti u MKS1 genu. Naime,\u00a0ustanovljeno je i da ova preslatka devoj\u010dica ima\u00a0<\/strong>smrtonosnu mutaciju gena\u00a0vezanu za bubrege i jetru.<\/strong><\/p>\n

Lekari, kako njena majka Tamara Stojanovi\u0107 pri\u010da, ne mogu da veruju da Janja uskoro puni 6 godina. Deca sa njenom dijagnozom uglavnom ne do\u010dekaju ni peti ro\u0111endan.<\/p>\n

Iako i dalje ne hoda i ne govori, u Janji kao da po\u010diva sva snaga ovog sveta –\u00a0prkosi statistikama i ne predaje se uprkos prognozama.<\/strong>\u00a0Tek sa pet godina po\u010dela je samostalno da sedi, hvata fla\u0161icu i \u017eva\u0107e, a prema re\u010dima njene majke, Janja je na nivou bebe stare 9 meseci.<\/p>\n

– Janjino stanje je sada stabilno, s obzirom na njen redak sindrom. Ipak,\u00a0preko no\u0107i mo\u017ee da do\u0111e do pogor\u0161anja i da za nju bude kasno. Zato je jako va\u017eno da pratimo enzime u njenom organizmu koji su jedini indikatori promene njenog stanja. Pri svakoj promeni, i najmanjoj, alarmiramo lekare, <\/strong>pri\u010da Tamara.<\/p>\n

S obzirom na to da devoj\u010dica ne govori, uspostaviti komunikaciju sa njom bilo je izuzetno te\u0161ko za roditelje.<\/p>\n

–\u00a0Bilo je jako te\u0161ko na po\u010detku, naga\u0111ali smo \u0161ta joj je, \u0161ta \u017eeli, \u0161ta je boli. Danas, posle toliko vremena, razumemo i kada je \u017eedna, jer podi\u017ee fla\u0161icu, pla\u010de kad je ne\u0161to boli, baca se kada je gladna… Upisala se u vrti\u0107 i deca pri\u010daju kako im je Janja najbolja drugarica. Na nju gledaju kao na bebu, a i ona se lepo uklopila, <\/strong>navodi na\u0161a sagovornica.<\/p>\n

Ipak, najve\u0107i deo dana, \u0161estogodi\u0161njakinja provodi na terapijama. Logopedi, defektolozi, fizikalna terapija… Tako izgleda Janjina svakodnevica, protkana \u010desto vi\u0161esatnim putovanjima do drugih gradova, gde je bilo neophodno da odlazi zbog terapija.<\/p>\n

– Gotovo tri godine smo na svaka dva, tri meseca i\u0161li u Novi Sad na terapije, po tri nedelje, i to je ko\u0161talo i po 6.000 evra.\u00a0Sada nam je potrebno 40.000 da bi Janja oti\u0161la u Nema\u010dku na le\u010denje. Tamo bi dobila lek, odnosno terapiju koja bi usporila rad enzima i tako joj produ\u017eila \u017eivotni vek, <\/strong>obja\u0161njava Tamara.<\/p>\n

Kako ka\u017ee, njena \u0107erkica jedina je u Evropi sa tim smrtonosnim genom, i dodaje: „Neverovatno je da je Janja \u017eiva<\/strong>„.<\/p>\n

Janju danas 40.000 evra deli od terapije koja za nju zna\u010di \u017eivot.<\/p>\n

Zato pomozimo ovom malom velikom borcu!<\/p>\n

Slanjem SMS poruke\u00a081<\/strong>\u00a0na\u00a03800<\/strong><\/p>\n

Uplatom na dinarski ra\u010dun:\u00a0160-6000001529721-53<\/strong><\/p>\n

Uplatom na devizni ra\u010dun:\u00a0160-6000001532197-94<\/strong><\/p>\n

IBAN:\u00a0RS35160600000153219794<\/strong><\/p>\n

SWIFT\/BIC:\u00a0DBDBRSBG<\/strong><\/p>\n

Uplatom putem Paypala na linku:\u00a0Paypal<\/strong><\/a><\/p>\n

Uplatom putem kartice na linku:\u00a0E-donacija<\/strong><\/a><\/p>\n

 <\/p>\n

 <\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

\u0160estogodi\u0161nja Janja Stojanovi\u0107 iz Kragujevca nije obi\u010dna devoj\u010dica. Janja je medicinsko \u010dudo, borac koji se u ko\u0161tac uhvatio sa\u00a0smrtonosnom mutacijom gena. Jedina je osoba u Evropi sa promenom u genu koja za posledicu uglavnom ima fatalni ishod. Janja na samom ro\u0111enju nije disala dva minuta\u00a0zbog \u010dega je intubirana i preba\u010dena na odeljenje neonatologije, gde je<\/p>\n","protected":false},"author":5,"featured_media":6944,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"slim_seo":{"title":"Maloj Janji potrebna pomo\u0107 da ode na le\u010denje - Neophodno jo\u0161 40.000 evra - Ritam Grada - vesti Kragujevac","description":"\u0160estogodi\u0161nja Janja Stojanovi\u0107 iz Kragujevca nije obi\u010dna devoj\u010dica. Janja je medicinsko \u010dudo, borac koji se u ko\u0161tac uhvatio sa\u00a0 smrtonosnom mutacijom gena . Je"},"footnotes":""},"categories":[6],"tags":[],"class_list":["post-6943","post","type-post","status-publish","format-standard","has-post-thumbnail","category-vesti"],"yoast_head":"\nMaloj Janji potrebna pomo\u0107 da ode na le\u010denje - Neophodno jo\u0161 40.000 evra - Ritam Grada - vesti Kragujevac<\/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:\/\/ritamgrada.rs\/kragujevac\/maloj-janji-potrebna-pomoc-da-ode-na-lecenje-neophodno-jos-40-000-evra\/\" \/>\n<meta property=\"og:locale\" content=\"sr_RS\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Maloj Janji potrebna pomo\u0107 da ode na le\u010denje - Neophodno jo\u0161 40.000 evra - Ritam Grada - vesti Kragujevac\" \/>\n<meta property=\"og:description\" content=\"\u0160estogodi\u0161nja Janja Stojanovi\u0107 iz Kragujevca nije obi\u010dna devoj\u010dica. 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