Tonki s ljubavlju

Pozdrav svima!

Ovo je naša 13-godišnja kći Tonka Jerković. Ona je djevojčica iz Zagreba, koja je do sada preživjela dva moždana udara. Da, dobro ste pročitali. Ne jedan, nego dva. Prvi 2013., kada je imala pet godina i drugi 2015., s osam godina. Posebno je težak bio drugi moždani udar, koji ju je ostavio nepokretnom, bez mogućnosti govora i kontrole gutanja. Tonka ima 100%-ni invaliditet 4.stupnja.

Sigurno vas zanima kako joj se to dogodilo? Ima bolest čudnog naziva: moyamoya. To je iznimno rijetka bolest krvnih žila i pogađa jednu osobu na 1.5 milijuna ljudi (češće u djece, nego u odraslih). Riječ je o poremećaju sužavanja krvnih žila u mozgu. Tijelo nastoji kompenzirati taj nedostatak, stvara okolne manje žile, kako bi zaobišao zahvaćeno mjesto, a takav novi (kolateralni) krvotok, nije kvalitetan i zdrav te izaziva neurološke probleme. Sreća u nesreći je što je područje oko bolesne žile moguće kirurški prepraviti. Tako je 11.3.2016.,Tonka operirana u Dječjoj bolnici u Zurichu, gdje često odlazimo na kontrole.

Uglavnom, doktori kažu da su njezine žile za sada dobro, da će Tonka jednog dana ponovno moći hodati, ali da mora svakodnevno puno vježbati. Mi u to vjerujemo, jer je Tonka već do sada napravila veliki napredak. Može sjediti, može samostalno jesti i piti, ponovno može pričati i nakon dvije godine pauze, ponovo je redovito krenula u školu.

Međutim, sve nas to jako puno košta. Do sada smo na rehabilitaciju utrošili gotovo 70 000 eura. Tonka vježba sa svojom fizioterapeutkinjiom svakoga dana. Izuzetno brz napredak pokazuje nakon robotske neurorehabilitacije, koja je vrlo skupa. Robot Lokomat, koji simulira hodanje i iznimno je koristan kod osoba koje su pretrpile oštećenje mozga, najskuplji je od sviju. Jedna terapija, koja podrazumjeva jedan satvježbanja, košta 100 eura. Jedan ciklus od tri mjeseca robotske terapije košta oko 10 000 eura. Tonki bi, za što bolji napredak u razdoblju adolescencije i intenzivnog rasta, bila potrebna barem dva takva ciklusa godišnje.

Također, naš stambeni prostor nije prilagođen Tonkinom stanju. Živimo u kući bez lifta, na prvome katu, kupaonica nam je jako uska, a Tonka sve veća, imamo stepenica unutar stana i još puno problema, koje bismo morali prilagoditi njezinim potrebama. Za sve nabrojane potrebe, koje nas neminovno očekuju, uz još pokoju koju nismo spomenuli (nabavka specijalnih ortoza za noge, senzorska reintegracija, logopedske vježbe i elektrostimulacija jezičnog mišičja, pomoć kod učenja i slično) nam je potrebno 30 000 eura.

Naravno da kao roditelji činimo sve kako bismo pomogli našoj Tonki. Sve što smo do sada uspjeli unovčiti, prodatii/ili staviti pod hipoteku, učinili smo. Na žalost, bez pomoći sviju vas, dobrih ljudi, mi dalje više ne možemo sami financirati Tonkin oporavak. Molimo vas da nam pomognete, kako bi Tonka imala djetinjstvo barem približno onomu kakvo svako dijete zaslužuje te kako bi postala što samostalnija.

Unaprijed se zahvaljujemo na svakoj donaciji i neka Bog blagoslovi svakoga tko nam odluči pomoći u našoj borbi!

Ivana i Vedran Jerković

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Hi everyone!

This is our daughter Tonka Jerković. She is a 13-years-old girl from Zagreb,who has already suffered two strokes. Yes, you read that well! Not one, but two strokes! The first one in 2013, when she was 5 years old and the second one in 2015, when she was 8. The second stroke was especially difficult for her, because she remained completely immobile, without the possibility of speaking and swallowing. Tonka became 100% degree disability.

You must be wondering how could this happen to a young girl? She has a disease of a strange name: moyamoya. It is an extremely rare vascular disease and affects one person in 1.5 million people (more often in children than in adults). It is a disorder of the narrowing of blood vessels in the brain. The body tries to compensate for this deficiency, creates surrounding smaller vessels, to bypass the affected area, and such a new (collateral) bloodstream is not of good quality and health and causes neurological problems. Fortunately, the area around the diseased vessel can be operated. So, in March, 2016, Tonka underwent surgery in the Children's hospital in Zurich and we still often go there for check-ups. The doctors say that her vessels are fine now, that Tonka will walk again one day, but that she needs to exercise a lot, every single day. We trust them, because Tonka has already made a huge progress. She can sit by herself, she can eat and drink on her own, she can talk again and after two years of pausing, she is going to school again.

However, all of this together costs us a lot of money. So far, we spent almost 70 000 euros on her rehabilitation. Tonka exercises with her physiotherapist every day. A huge and fast improvements are made by robotical neurorehabilitation, which is very expensive. The Locomat, robotic machine for excersising walking, is the most expensive one. One hour therapy costs 100 euros. One three-month cycle of robotic neurorehabilitation costs around 10 000 euros. It would be very useful for Tonka (esspecially now in her adolescent period) to do at least two of such cycles per year.

Also, our living space is not adapted to Tonka's condition. We live in a house without an elevator, 1st floor, our bathroom is very narrow and she is getting bigger, we have some stairs in our appartement and so on.

For all those needs that we have described and lots of those that we haven't mentioned (like special orthoses for her legs, sensorical reintergration, speech therapy and electrostimulation of the tongue muscles and so on) we need 30 000 euros.

Of course as parents we do everything to help our Tonka. Everything we have managed to cash in, sell and/or mortgage so far, we have already done. Unfortunately, without the help of all of you good people, we can no longer finance Tonka's recovery on our own. Please help us, so that Tonka has a childhood at least close to what every child deserves and so that she becomes as most independent as possible.

We thank you in advance for every donation and may God bless everyone who chooses to help us in our struggle!

Ivana i Vedran Jerković