Help Zara to continue therapy and to start walking
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Hi, My name is Gordana Bojanović Sivčević, I am the mother of Zara, eight years old girl. She cannot walk. Child with many diagnosis: she has cerebral palsy, - hypotonic syndrome level II –III, delayed development, premature nata , Hypotropia ... More ...

Hi,

My name is Gordana Bojanović Sivčević, I am the mother of Zara, eight years old girl. She cannot walk. Child with many diagnosis: she has cerebral palsy, - hypotonic syndrome level II –III, delayed development, premature nata , Hypotropia intrauterine, vcc-foramen ovale apertum, luxatio coxae dex., contracture geni bil et pes equinovarus sin. ( Diagnosis dated 15.11. 2007. Pediatric clinic UKC Ljubljana), born premature (in 28th week of pregnancy) with severe contractures and deformities, undeveloped and “incomplete” as they categorised her. According to Apgars scale, used to assess the condition of newborn children from 0 to 10, Zara scored 0. Zara, the girl who was named as Shine, as Zara in any language, any culture means shine and brightness. For eight years Zara is fighting for each movement, for every moment of her future better life. We used to live in Tuzla, Bosnia and Herzegovina, in a happy and loving family. Unfortunately, Zara’s life demanded enormous medical attention, knowledge and opportunities, therefore , my dear daughter and I moved to Ljubljana, Slovenia in 2008. My son and husband still live in Tuzla. For 6 years, Zara and I live in rented apartment in Ljubljana and fight our battle. A BATTLE FOR BETTER FUTURE FOR ZARA. Zara endured three surgeries, two on her left foot and one of her right hip. Every day of her life she is in treatment with capable and professional therapists: physiotherapist, occupational therapist, speech therapist. In September 2013 Zara started to go to first class of primary school CIRUS – Centre for education and rehabilitation in Kamnik, town about 30 km away from Ljubljana. Every morning the minibus collects her at 06:15 and she is back at 17:15 afternoon. Whole day is scheduled as, apart from regular classes, she has two hours of treatments (physio, occupational and speech). In a week she will be starting the TheraSuit Method for three weeks for four hours daily of swimming and riding exercise. Too strenuous for a little girl of her age and her condition. But, my daughter’s only wish is to ... WALK...SOME DAY.., and therefore she exercises every day with all her will and strength. And she achieved fantastic results. At one year of age, she could only lay down. She had no head control, her spine was bending like rubber, dislocated hip, feet facing opposite of normal direction, along the leg, knees bent in foetus position, fingers stuck to her palms. .. Stint on her heart was opened until she was two, fontanels on her head did not fuse until she was three. A little, “incomplete”, “brain less”, undeveloped functions... No one gave her any survival prognosis. And even if she did, they said she will live as plant, just vegetate. Zara would not vegetate, she would live, Zara decided to fight. Today she talks, sings, recites, she has fantastic memory, speaks both mother and Slovenian tongue, she is learning English. She can sit, she crawls, and she cycles. Few months ago she got orthotic aids for both legs and now she practices standing and stepping. Outlook is very optimistic. Everyone working with her is impressed with her willpower, persistence, brightness and loving nature. She loves people, loves her every day. And only wants to walk. Unfortunately, our biggest problem and enemy is money. We live in Slovenia last 6 years and we have no regulated residency. We have no option of health cover and must pay for everything ourselves. Zara’s treatments and rehabilitation, her surgeries, orthopaedic aid (wheelchair, orthotics, frame), apartment, and living expenses. Our monthly expenses amount to €2000 for past 72 months. Only her operations and aids were costing over 25000€. My husband, (electro-technical engineer) works at Tuzla University and his monthly wage is €500. Insufficient for himself and son, who is also student on Third year of Eclectic Engineering. We have loans, which we can hardly manage monthly, we sold a lot of valuables we had (art pictures, gold, property), inheritance. The State of Slovenia has once again refused to allow us permanent residency and we are forced to continue to pay for complete schedule of our daughter’s treatment for yet another year, along with our minimal living expenses this will cost at least €30 000. And we simply don’t have money. Now she also needs electric orthopaedic wheelchair that, because of her condition and smaller constitution, must be adapted for her needs. With additional features for her body. This wheelchair SALSA R cost €9300 with extra features for her. .. Apart from all these difficulties that she bravely and strongly fights, Zara also has a big problem with her sight. The assessment under anaesthetic and possible surgery without medical cover, it is all so expensive and we don’t know how to solve this.

I am writing to you and strongly hope that you can help my daughter to continue her therapy and to start walking some day ..

You can follow all about Zara at the link: https://www.facebook.com/zarakazvjezdama ; https://www.facebook.com/groups/1471355389759297/ and https://www.facebook.com/groups/139425472779844/

Poštovani!

Ja sam Gordana Bojanović Sivčević, mama djevojčice Zare. Zara ima osam godina. Ne hoda. Djete sa dijagnozama: cerebralna paraliza-hipotoni sindrom-stopnja II-III, razvojni zaostanak, prematura nata, hipotrofija intrauterina, vcc-foramen ovale apertum, luxatio coxae dex., contractura geni bil et pes equinovarus sin. ( Nalaz 15.11.2007. Pediatrična klinika UKC Ljubljana), rođena prerano (u 28 nedjelji moje trudnoće), sa teškim kontrakturama i deformitetima, nerazvijena i "nezavršena" kako su je kategorisali. Po Apgarovoj ljestvici po kojoj se mjere vrijednosti stanja novorođenčeta od 0 do 10, Zara je bila 0. Zara, djevojčica, koja je dobila ime značenja SJAJ. Jer Zara je na svim jezicima, u svim kulturama i podnebljima: sjaj, svjetlost. Osam godina Zara se bori za svaki svoj pokret, za svaki trenutak svog budućeg boljeg življenja. Živjeli smo u Tuzli, u državi Bosni i Hercegovini, u jednoj veseloj i ljubavlju ispunjenoj obitelji. Nažalost, Zarino življenje je zahtjevalo ogromnu liječničku pomoć, znanje i sposobnost, pa smo se 2008. godine moja draga djevojčica i ja preselile u Ljubljanu, u Sloveniju. Moj sin i muž su ostali da žive u Tuzli. Šest godina, Zara i ja u Ljubljani stanujemo u iznajmljenom stanu i borimo našu bitku. BITKU ZA ZARINU BOLJU BUDUĆNOST. Tri operacije je Zara prošla, dvije operacije lijevog stopala i operaciju desnog kuka. Svaki dan svog života vježba sa sposobnim i profesionalnim stručnjacima: fizioterapeut, radni terapeut, logoped. U septembru 2013. godine Zara je krenula u prvi razred osnovne škole u CIRIUS- Centar za obrazovanje, rehabilitaciju i usmjeravanje u Kamnik, gradić udaljen od Ljubljane tridesetak kilometara. Zara svako jutro putuje kombijem koji dođe po nju u 06.15 i vraća se popodne u 17.15 časova. Cijeli dan joj je programiran, jer osim redovnih časova svaki dan ima po dva sata terapija (fizioterapija, radna terapija, logoped), a za tjedan dana počinje i sa therasuit terapijom koja traje tri tjedna dnevno po četiri sata i vježbama plivanja i jahanja. Prenaporno za djevojčicu njenih godina i njenog stanja. Ali moja kćerka ima želju da ...HODA JEDNOG DANA.... i zato svaki svoj dan sa ogromnom voljom i snagom vježba. Postigla je fantastične rezultate. Sa godinom dana, samo je mogla ležati. Nije imala kontrolu glave, kičma joj se savijala kao od gume, iščašen kuk, stopala okrenuta obrnuto od prirodnog položaja, uz nogu, koljena savijena u fetus položaju, prsti na rukama zalijepljeni uz dlanove.... Šant na srcu otvoren do druge godine, fontanele na glavi nisu srasle do treće godine života. Mala, "nezavršena", "praznoga mozga", bez razvijenih centara....Niko joj nije davao šansu da će i preživjeti. A ako i preživi, svi su govorili da će živjeti kao biljka, da će vegetirati. Zara nije željela biti biljka, nije željela ne živjeti, Zara se odlučila boriti. Danas priča, pjeva, recituje, ima fantastičnu memoriju, govori dobro slovenski uz svoj maternji jezik, uči engleski. Sjedi, puzi četvoronoške, vozi bicikl. Prije par mjeseci urađene su joj ortoze za obadvije noge i sada vježba stojanje i iskorak. Prognoze su vrlo optimistične. Svi koji rade sa njom su oduševljeni njenom voljom, upornošću, njenom vedrinom i milom naravi. Ona voli ljude, voli svaki svoj dan. I samo želi da hoda. Nažalost, naš najveći problem i neprijatelj je novac. Šest godina živimo u Sloveniji i nemamo uređen status. Nemamo mogućnost uređenja zdravstvenog osiguranja i sve sami plaćamo. Zarino liječenje i rehabilitaciju, njene operacije, ortopedska pomagala (kolica, ortoze, stojalicu), stan i toškove stanovanja, naše življenje. Mjesečni troškovi nam iznose oko 2000 €, sada već punih 72 mjeseca. Same njene operacije i pomagala koštala su nas preko 25 000 €. Moj muž (inženjer elektrotehnike) je zaposlen na Tuzlanskom univerzitetu i ima mjesečna primanja 500€. Nedovoljno za život njemu i sinu, koji je takođe dobar student treće godine elektrotehnike. Imamo kredite, koje teško uspjevamo mjesečno otplaćivati, prodali smo mnogo vrijednosti koje smo imali ( umjetničke slike, zlato, nekretnine), zaostavštinu koju smo naslijedili. Država Slovenija je opet odbila naš zahtjev za dodjelu stalnog boravka i prinuđeni smo i narednu cijelu godinu plaćati kompletan program liječenja naše kćerke, što sa nužnim troškovima za življenje iznosi minimalno 30 000€. A mi jednostavno nemamo novca. Zari su sada neophodna i električna ortopedska kolica, koja zbog njenog stanja i sitnije građe, moraju biti napravljena isključivo za nju. Sa svim potrebnim dodacima za njeno tjelo. Takva su kolica SALSA R, koja koštaju 9300€, naglašavam sa posebnim dodacima za nju. UZ sve probleme koje ima i sa kojima se hrabro i snažno bori, Zara ima i veliki problem s vidom. Sam pregled pod anestezijom i čak moguća operacija za nas koji nemamo zdravstveno osiguranje je takođe skupo i čak ni to ne znamo kako ćemo rješiti. Pišem vam, u lijepoj vjeri da ćete  pomoći mojoj kćerki da nastavi sa liječenjem i da jednog dana i ona hoda.

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