Tari od srca / From the heart for Tara

(the text in English is below the text in Croatian)

Moje ime je Tara. Imam 13 godina. Kažu da sam posebna djevojčica.

Očaravam sve svojim direktnim pristupom, dobrotom i vedrinom. Nema toga tko me ne zna u mojem kvartu Špansko, u gradu Zagrebu, u kojem živim.

Već na prvi pogled, puno toga me razlikuje od mojih vršnjakinja. Imam jednu jako rijetku, neizlječivu genetsku bolest koja se zove Wolf- Hirschhorn Sindrom. U svakoj stanici moga tijela, nedostaje mi jedan oku nevidljivi dio genetskog materijala. I baš taj mali, neostvareni dio moje osobnosti, donio mi je brojne dijagnoze mojim dolaskom na ovaj Svijet.

Rođena sam bez tvrdog i mekog nepca. No doktor me je uspješno operirao. Ostala je samo jedna mala rupica kao podsjetnik na te teške dane. Moji zubi se teško razvijaju uz prisutne deformitete. Sve vam je to nekako povezano. Zbog toga nikad nisam sisala i ne mogu žvakati. Hranu je moje tijelo teško prihvaćalo. Nikad me nisu mogli dovoljno nahraniti. Zato još uvijek jako teško gutam. Posebni pripravci, vitamini, minerali, posebna mlijeka i prilagođena hrana dio su moje svakodnevne prehrane. Jedem samo miksanu hranu, od kad znam za sebe.

Kako bi bar malo bila svoja i ne odlutala u neki drugi svijet, što sam prije znala često činiti nesvojevoljno, primam svakodnevno anti epileptičnu terapiju. Moja kralježnica i ramena su se počela svijati tako da svaki dan moram vježbati s fizioterapeutom i ići često na terapijsko plivanje.

Iako sam sada već velika djevojčica, moja sedmogodišnja sestra je već sad visoka kao ja. Zadnjih pet godina primala sam hormonsku terapiju da ipak malo više narastem. Danas imam samo 27 kg i visoka sam kao prvoškolka. Čak je i medicinska dokumentacija postala viša od mene. No, i ovo je veliki napredak. Imam tek 13 godina!

Moja mama i tata kažu da sam ja veća od samog života. Toliko puta sam pobijedila i toliko toga prošla, koliko jedan čovjek može proći jedino u tri života.

Mojim posebnostima tu nije kraj. Ne mogu na žalost pričati. A to mi je moja najveća želja.

Uz svu ljubav, pažnju i dobrotu, moji su roditelji uz podršku naših bližnjih, uložili sve potencijale u moj razvoj. Do sada su, od mojega rođenja do danas, samo u moju rehabilitaciju, terapije i lijekove uložili više od 200.000 €. Prodali su i naš veliki stan u kojem smo još donedavno živjeli. Sve čine da mi pomognu u mojem razvoju i donekle održe normalnim život naše obitelji. Ali znate i sami kako to ide s nama, djecom s posebnim potrebama. Sve je nekako polako i s nepredvidivim ishodima. Roditelji bi uvijek htjeli više, da jednog dana budem donekle samostalnija i spremnija za svakodnevni život.

Ja idem i u školu! Nije to baš prava škola. Ona je posebna, baš kao i ja. Sve je tamo prilagođeno mojim mogućnostima i potrebama. Obožavam biti među mojim prijateljima s kojima dijelim slične sudbine i radujem se edukaciji i igri s našim divnim logopedima, defektolozima, radnim terapeutima... Kako tamo trenutno ne mogu ići zbog ovog čudnog virusa, jer me zbog slabog imuniteta štite od moguće zaraze koja bi za mene bila još jedan u nizu životnih izazova, svi moji troškovi svakim danom sve više rastu.

Za sve moje aktivnosti, od hranjenja, oblačenja do odlaska na WC i tuširanja trebam svakodnevnu pomoć. Zato je moja mama stalno uz mene od mojeg rođenja. Moja, i statusom njegovateljica, od koje se ne odvajam i bez koje ne mogu u svim teškim trenucima. A bilo ih je jako puno. Za svu tu nesebičnu brigu, pažnju i ljubav prima naknadu koja na žalost ne pokriva ni dio mojih mjesečnih terapija i životnih potreba. A moje potrebe svakim danom su sve veće.

Moja mama kaže da sam njezin anđeo. Njezino sve.

Zato se ja toliko i smiješim.

U ovo predblagdansko vrijeme djeca već pripremaju pisma djedu božićnjaku, pa je i moja sestra u svom pismu spomenula i mene. Ide nekako ovako… „…a Tara da konačno progovori jer ju stvarno ništa ne razumijem“.
Zato, imam samo jednu želju za ovaj Božić. Da naučim žvakati i govoriti.

Kažu mi da imam skriveni dar kojem treba pružiti priliku da se ostvari u svom punom potencijalu. Uz dugoročnu primjenu posebnog uređaja i prilagođenog softvera koji stimulira, jača i razvija moje mišiće i povezuje s centrima u mozgu za unapređenje mojeg govornog aparata, moje šanse za uspjeh su velike.

Danas po prvi puta i pišem, kroz ovaj zapis mojeg tate, zamolbu za pomoć, za vaš mali doprinos, za moj veliki svijet osobnih potencijala. Dugoročna terapija žvakanja i govora, uz edukaciju roditelja, prilagođene ortodontske terapije i rehabilitaciju, logopedske vježbe, fizioterapeutske vježbe, terapijsko jahanje i plivanje, kao i moji posebni lijekovi, pripravci i hrana su jako skupi.

Sve navedene potrebe koje me očekuju u ovome programski predviđenom dvogodišnjem multidisciplinarnom rehabilitacijskom periodu, iznose minimalno 75.000 €. Taj iznos, na žalost, moja obitelj bez vaše pomoći ne može sama financirati.

Zato trebam vašu podršku, dobrih ljudi, velikog srca.

Puno je navedenih potreba, a potencijali za njihovu realizaciju su nažalost, svakim danom sve manji. Vašom donacijom pomogli bi i mojoj obitelji, da opstanemo u ovim teškim vremenima koja su pred nama.

Danas nije lako biti dijete kao ja.

Moji roditelji su poželjeli puno puta da se dogodi čudo i moje potpuno ozdravljenje. Ali kao da ova moja bajka neprestano traje i odgađa njezin očekivani čudnovati završetak koji će jednim poljupcem riješiti sve moje brige. Ili samo, bar jedan dodir čarobnog štapića, bio bi sigurno dovoljan…

Teško je ukratko opisati što sve prolaze obitelji s nama, djecom s posebnim potrebama. Promatrati izvana, ovaj bajkoviti svijet i povremeno zaviriti u onaj njegov ljepši dio nije dovoljno za potpuno razumijevanje istinskog, svakodnevnog života jednog invalida, ispunjenog i brojnim izazovima i teškim trenucima.

13 godina traje moja priča. I ona vjerujem još uvijek nije ispričana do kraja.

Ne damo se. Borimo se. Ustrajemo. Svaki dan je novi izazov. Za sve nas.

Od srca zahvaljujem na svakoj vašoj donaciji za ostvarenje mojih životnih potencijala i život moje obitelji!

Želim Vam puno ljubavi, zdravlja i radosti!

Vaša Tara
(tekst napisao tata Ivan Radišić, u Tarino ime)

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My name is Tara. I am 13 years old. They say I'm a special girl.

I enchant everyone with my direct approach, kindness and serenity. There is no one who doesn't know me in my neighborhood Špansko, in the city of Zagreb, where I live.

At first glance, a lot distinguishes me from my peers. I have one very rare incurable genetic disease called Wolf-Hirschhorn Syndrome. In every cell of my body, I am missing one, invisibile part of the genetic material. And just that little, unrealized part of my personality brought me numerous diagnoses with my coming to this World.

I was born without a hard and soft palate. But the doctor operated me successfully. There was only one small hole left as a reminder of those hard days. My teeth have developing difficulties with the present deformities. It’s all somehow connected. That’s why I’ve never nursed and I can’t chew. The food was hard for my body to accept. They could never feed me enough. That's why I still swallow very hard. Special preparations, vitamins, minerals, special milks and customized food are part of my daily diet. I've been eating mixed food, ever since I know for myself.

In order to be at least a little bit of my own and not wander into another world, which I used to do often involuntarily, I receive antiepileptic therapy every day. My spine and shoulders have started to bend so I have to exercise with a physiotherapist every day and go for therapeutic swimming often.

Even though I’m a big girl now, my seven-year-old sister is already as tall as I am. I only weigh 27 kg and I am as tall as a first grader. Even the medical records became taller than me. But this is also a big step forward. I am only 13 years old!

My mom and dad say I’m bigger than life itself because I’ve won so many times and I’ve been through so much, how much one ordinary man can go through in just three lives.

There is no end to my peculiarities. I can't talk, unfortunately. And that is my biggest wish.
With all the love, attention and kindness, my parents, with the support of our loved ones, have invested all their potential in my development. So far, from my birth to the present day, they have invested more than € 200,000 in my rehabilitation, therapies and medicines. They also sold our large apartment in which we lived until recently. They make everything to help in my development and to keep our family life normal. But you know how it goes with us, children with special needs. Everything is somehow slow and with unpredictable results. Parents would always want more, so that one day I will be somewhat more independent and ready for everyday life.

For all my activities, from feeding, getting dressed to going to the toilet and showering, I need daily help. That’s why my mom has been with me constantly since I was born. My caregiver, from whom I don't separate and without whom I can't in all difficult moments. And there were a lot of them. For all that selfless care, attention and activities around me, she receives compensation that unfortunately doesn't cover even a part of my monthly therapies and life needs. And my needs are growing every day.

My mom says I’m her angel. She also tells me I'm her gold.

She says I am her everything. Simply everything.

That's why I smile so much.

At this pre-holiday time, the children are already preparing letters to Santa Claus, so my sister also mentioned me in her letter. It goes something like this…… "... and Tara to finally speak because I really don't understand her anything. "
So, I only have one wish for this Christmas. To learn to chew and talk.

They tell me that I have a hidden gift that needs to be given a chance to be realized to its full potential. With the long-term application of a special device and customized software that stimulates, strengthens and develops my muscles and connects to the centers in the brain to improve my speech apparatus, my chances of success are high. And when Corona stops, I will go to a 3-month special rehabilitation with my mom. I'll fly with a plane and I am very happy about that!

Today, for the first time, I am writing, through my dad's record, this request for help, for your small contribution, for my great world of personal potentials. Long-term chewing and speech therapy, along with parental education, customized orthodontic therapies and rehabilitation, speech therapy exercises, physiotherapy exercises, therapeutic riding and swimming, as well as my special medications, preparations and food are very expensive.

All this needs that await me in this programmatically provided two-year multidisciplinary rehabilitation period of speech therapy, amounts to approximately € 75,000. That amount, unfortunately, my family can't finance on its own without your help.

That is why I need your support, good people with big hearts. There are many of these needs, and the potential for their realization is, unfortunately, getting smaller every day. With your donation you are also helping my family to survive in these difficult times ahead.

Today, it is not easy to be a child like me.

My parents wished many times for a miracle to happen and my complete healing. But it’s as if this fairytale of mine is constantly going on and postponing its expected weird ending that will solve all my worries with one kiss. Or just one touch of a magic wand, would certainly be enough.

It is difficult to describe briefly what families go through, with us, children with special needs. Observing from the outside, this enchanted world and occasionally peeking into that more beautiful part of it, is not enough to fully understand the true, everyday life of a disabled person, filled with many challenges and difficult moments.

My story lasts 13 years. And I believe it hasn't yet been told to the end. We don't give up. We are fighting. We persevere. Every day is a new challenge. For all of us.

Thank you from the bottom of my heart for each of your donations for the realisation of my life potentials and the life of my family!

I wish you a lot of love, health and joy!

Your Tara
(text written by her dad Ivan Radišić, on Tara's behalf)