Gaja {Posebna lepota/Special Beauty}

Mala Gaja, ki premika meje. Polna je odločnosti in v očeh ji piše, da ne obupa kar tako. Njena živahnost je nalezljiva – povsod je je polno in težko bi rekla, da mala deklica kdaj ni bila zmožna delati korakov. Navušuje in navdihuje.
Gajina mamica je o svoji hčerki zapisala tele besede:
Kljub svojim še ne 4 letom je Gaja v svojem življenju doživela več kot večina njenih sovrstnikov. S svojo simpatičnostjo je združila celo Slovenijo, ki so zbirali za njeno operacijo ter navijali za njene prve korake. Volja, trma, odločnost, da ne bo zaostajala za drugimi otroci, jo vodijo skozi vsakodnevne terapije in ovire, ki jih srečuje na svoji poti. Tako je dosegla mnogo več kot samo prve korake. Sedaj obiskuje celo krožke, kot so judo in plesne vaje. Slednje so ji trenutno najljubše, saj je v prvi vrsti še vedno deklica, ki rada nosi lepa baletna krilca, drese in plesne copatke. Njena največja prijateljica, vzpodbuda in motivacija ji je sestrica Zoja, s katero se lovita, plešeta in igrata, včasih pa tudi borita za kako stvar, saj je ponavadi obema zanimiva ravno ista ista igrača.
Pod vso njeno borbenostjo pa se kljube temu skriva nežna deklica, ki ima neskončno rada svojo sestrico, očka in mamico. To tudi večkrat pove in nas preseneti s kako risbico ali rožico izdelano iz plastelina.
Zelo si želi v vrtec in šolo, saj do sedaj zaradi vsakodnevnih terapij to ni bilo mogoče. Toda z naslednjim šolskim letom se ji bo uresničila tudi ta želja in Gaja bo lahko hodila v vrtec in se igrala z ostalimi otroci.
Je deklica s tisoč željami ter z neverjetno energijo in voljo. S to kombinacijo ima tako odprte prav vse poti v življenju.

Gaja – little girl who is pushing boundaries. She is full of determination and you can see in her eyes that she doesn0t give up just like that. Her liveliness is contagious – she is all over the place and it is really hard to say she once couldn’t take few steps by herself. She amazes and inspires.
Gaja’s mother wrote these words about her daughter:
Even though Gaja is not yet 4 years old she has experienced more in life than most of her peers. She united entire Slovenia with her pleasantness in a fund-raising campaign for her first steps. Her will, her stubbornness, her determination that she won’t fall behind other children – all of that leads her through everyday therapies and obstacles she passes on her way. She achieved so much more than just first steps. Gaja is now even attending some lessons like judo and dancing class. Dance lessons are currently her favourite – she is still a little girl who likes to wear ballet dresses, tutus and dancing shoes. Her best friend, encouragement and motivation is younger sister Zoja – they chase each other, dance and play together and sometimes fight for a toy that happens to be interesting for both of them.
Beneath her fighting spirit is a gentle little girl that infinitely loves her sister, daddy and mummy. She often expresses her love out loud and surprises us with one of her drawings or play-doh flower.
She would love to go to kindergarten but till this moment that wasn’t possible because of everyday therapies. Her wish will be fulfilled next school year and Gaja will be able to play with other children in kindergarten.
Gaja is a girl with thousand wishes and unbelievable energy and willpower. It is the perfect combination that will open doors for her in life.
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Maj {Posebna lepota/Special Beauty}

Maj je prečudovit mesec. Sončen, topel, cvetoč. Vse brsti in je polno življenja. Ustnice se ti kar same vijejo v nasmeh.

 

Tako je bilo tudi konec septembra, ko sem spoznala posebnega dečka Maja. Mali radovednež je poln življenjske sile in sreče. V njegovi družbi preprosto ne moreš ostati slabe volje, saj mali Maj s svojimi duhovitimi domislicami usmerja tvojo voljo in počutje na sončno stran življenja.

V njegovi družbi se zaveš, da ti resnično ti treba čakati pomladi, pomlad si lahko ustvariš sam.

 

Majeva mamica je o svojem sinku zapisala takole:

“Rodil se je še pred istoimenskim pomladnim mesecem, a njemu je to ime bilo namenjeno! Čez 4 polne lune bo postal 6 letnik in ker se za to mladost spodobi, da je razposajen, se v celoti opiše MAJA. Je navihan, živahen, zvedav, uporniški, a hkrati nežen, srčen in neverjetno zgovoren fantič, ki bi z vsakim mimoidočim spregovoril kako besedo, če bi si vzeli minutko časa in namenili vsaj nasmeh, če ne že kakšne besede z njim. Zelo rad ima mikrofon in če bi bilo po njegovo, bi še ta trenutek bil nekje na odru in vam zapel kakšno pesem od U2. Roker po duši, ki obožuje tudi Modrijane. Včasih si izmisli tudi kakšno svojo verzijo znane melodije, predvsem, ko želi očarati bližnjega ali osebo, ki mu je všeč. Rad je v družbi svojih prijateljev, a vedno je prostor za kakšnega novega. Všeč so mu risanke in ustvarjanje z rokami z vsemogočimi materiali, zato se tudi tako dobro znajde v babičini kuhinji, ko imitira Jamiea Oliverja. Ko pomislim nanj, mi zaigra srce – posebno takrat, ko me zjutraj prebudi z besedami: “Mami, a veš koliko te imam rad?” Mami:”Koliko?” Maj:”59 kilometrov na uro!”Moj dan je popoln, njegov pa se šele začenja!

Nisem vešča z besedami, a toliko lepih trenutkov se lahko zgodi z njim, da jih je včasih težko opisati. Predvsem pa je vedno nasmejan in dobrovoljen.”

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May is a wonderful month. Sunny, warm, blooming. The buds are sprouting everywhere and everything is full of life. Your lips are curving into a smile all by themselves.

That exact feeling I had at the end of September, when I’ve met a special boy called Maj (May). Curious little boy is full of energy and happiness. There is no way you’d stay in a bad mood when you are in his company – Maj transfers your mood and your  will to the sunny side of life.

When you are with him you realise that you don’t need to wait for spring (as a famous Slovenian song goes) – you can make your own spring right now.

 

May’s mother wrote those words about her son:

“He was born before the actual month he was named after, but that name was meant for him.  In 4 full moons he will become a 6 years old boy and he is as vivacious as youth should be – he is best described as May. He is playful, lively, enquiring, a bit rebellious, but yet gentle, heartfelt and incredibly talkative boy who would talk to any passer-by if they would take a minute and give him a smile or a word. He really likes a microphone and if it would be as he wants, he would have been right this moment somewhere on a stage singing you an U2 song. He is a rocker by heart but he also loves country style and a band Modrijani. He sometimes comes up with his own version of a well-known tune – especially when he wants to impress his relatives or people he likes. He enjoys the company of his friends but there’s always room for some more. He likes watching cartoons and likes to create different things with his hands from various materials – that is why he finds himself so good in grandma’s kitchen while imitating Jamie Oliver. When I think about him, my heart sings – especially when he wakes me up in the morning with these words:

“Mom, do you know how much I love you?”

Me: “How much?”

Maj:” 59 km/hour!”

My day is perfect from that moment on and his day is just beginning.

 

I’m not strong with words –  there are so many beautiful moments with my boy that they are sometimes hard to describe. But most of all he is always in cheerful mood and smiling.”

 

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Anita {Posebna lepota/Special beauty}

Anita je prav zdajle v tem trenutku, že čez lužo, v Ameriki. Lepo in nežno dekle je polno življenjske moči, v očeh pa je moč zaznati čisto rahlo sled nagajive živahnosti. Prvič sem jo v živo spoznala na enem izmed tekov, ki smo se jih udeležili tudi otroci s posebnimi potrebami in njihovi starši. Te sončne nedelje, ko je bilo po dolgem času celo zares toplo, pa sem jo imela priložnost spoznati malo bolje -in njeno družino tudi.

Čudovito jo je bilo opazovati, kako lep, pristen odnos ima s svojim bratom. Pravzaprav je cela družina neskončno povezana, vsi skupaj hodijo proti trenutno najpomembnejšemu cilju zanje – izboljšati Anitino življenje. Prav zaradi tega so se odločili, da odpotujejo v Ameriko, kjer bodo s posebnim posegom Aniti skušali omogočiti, da se postavi na lastne noge.

 

Tole je Anita napisala o sebi:

Sem Anita Stopar, stara sem 11 let in obiskujem OŠ Braslovče. Ob prostem času se rada pogovarjam z bratom Kristjanom in gledam televizijo. V šoli imam spremljevalko Katjo Rojnik, s katero se zelo dobro razumeva. Kmalu bom začela obiskovati 6 razred, šolskega leta se že zelo veselim in upam, da bo tako uspešen kot lanski. S sošolko Valerijo pa se bova tako kot lani udeležili treningov juda pod vodstvom trenerja g. Igorja Trbovca. S spremljevalko Katjo in družino pa se septembra odpravljam v ZDA na operacijo. Optimistična in polna pričakovanj upam, da bo operacija uspela.

 

Srečno, Anita!

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In the moment of writing this post Anita is already across the ocean – in America. Beautiful and tender girl is full of strength and in her eyes you can sense just a little bit of playful liveliness. The first time we’ve met was on one of the runs that a children with special needs and their parents also had participated. But that sunny Sunday we took this photos – it was sunny and warm after very long long time of cold weather – that Sunday I’ve got the chance to get to know her and her family a little better.

It has been wonderful to watch her with her brother, how genuine and good is their relationship. In fact the whole family is infinitely inherent. They are all together walking towards their currently most important goal – to improve Anita’s life. That is why they decided to go to America where the doctors will be trying to help Anita get on her feet with special surgical procedure.

 

Anita wrote about herself:

I am Anita  Stopar, I am 11 years old and I attend primary school in Braslovče. In my free time I like to talk to my brother and watch TV. In school I have an attendant Katja Rojnik and we get along very well. I am now attending 6th grade and I am very happy to be back to school after summer vacations. I hope this school year will be just as succesful as the last one. Me and my schoolmate Valerija are going to be training judo under the guidance of our coach Igor Trbovc. Me, my family and my attendant Katja are setting off to America in September. I optimistically and with lots of expectations hope that the surgery will be a success.

 

Anita, good luck and best wishes to you!

 

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Sara {Posebna lepota/Special Beauty}

Sara je posebna deklica z največjim nasmeškom, kar sem jih kdajkoli videla. Njen nasmeh dela čudeže. Še na tako oblačen dan prikliče sonce, dobesedno. Ob njenem nasmehu odmisliš vse težave in se zaveš, kaj je v življenju resnično pomembno.

Ljubezen.

 

Njeno mamo sem prosila, naj mi napiše nekaj malega o svoji deklici. Hvalabogu me ni ubogala in je napisala malce več. Ohranila sem besedilo v izvirniku brez kakršnega koli prilagajanja ali skrajševanja.

Sara je oseminpolletna deklica, ki zna spreminjati svet okrog sebe. Najprej je učiteljica, saj ima že od svojega rojstva poslanstvo, da uči o vrednotah. Je namreč posebna deklica, ki ne zmore hoditi, sedeti in govoriti. V svojem življenju pa je prišla že zelo daleč, vsak trenutek med ljudmi pa pove ogromno. Pove, da človek zmore biti srečen tudi na drugačen način. Pove, da je sprejemanje drugačnosti ključ do komunikacije v svetu. Nenazadnje pove, da nobena bitka ni izgubljena in da nobena borba ni zaman.

Potem je hči. To je le odnos velikega ponosa. Najprej sta bili Sara in mami. Tandem. Potem je prišel ati Herman. Sara ima ogromno ljubezni za ljudi, ki jih ima rada. Za vse, ki jo sprejemajo. Njih zna narediti posebne. In največ za tiste, ki ji v vsakdan znamo pričarati smeh.

Sara je velika sestra. Sedemmesečna Ajda je njena zaupnica. Sestra je bitje, ki ga zjutraj rada vidi ob sebi in katere poljub za lahko noč je ovit v tančico skrivnosti. Njun odnos je poseben prav toliko, kolikor je posebna Sara. Onidve govorita z očmi. Povesta si vse.

Sara je tudi prijateljica, kar ima priložnost izkazovati v njenem oddelku posebnega programa vzgoje in izobraževanja na OŠ Roje v Domžalah. Tam so iskreni prijatelji, tovariši, ki en drugemu pomagajo v težavah in tudi v lumparijah. Eden za drugega so pripravljeni pretakati solze. Dobesedno.

In nenazadnje, Sara je velika ljubiteljica živali in narave. To je njena strast, ki jo umirja. Ji da navdih. Jo zaziblje v njene poglede daleč onstran … In ji ustvarja nove zgodbe.

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Sara is a special girl with the biggest smile I’ve ever seen . Her smile creates miracles . Her smile evokes sun on a cloudy day, literally . And when you see her smile you forget all the problems and become aware of what is truly important in life .

Love .

I asked her mother to write me a little something about her little girl. Thankfully she did not obey and she wrote a little more than I expected. I’ve kept all the words without any adjustment or shortening.

Sara is eight and half years old girl who can change the world around her. Firstly she is a teacher, her mission since her birth is teaching others about values. She is a special girl who cannot sit, walk or talk. Still in her life she’s come a long way and every moment she is surrounded by people she silently speaks about the most important things. She is telling that we can be happy in many ways. She is telling that our acceptance of diversity is the true key to the better communication in the world. Finally she is telling us that no battle is lost and no struggle is in vain.

Than she is a daughter. That is a relationship of a great pride. First there were Sara and her mommy. Then came daddy Herman. Sara holds a lot of love for the people she loves. For those who accept her. She can make them special. The biggest love she has for those who are bringing smile into her life.

Sara is a big sister. Her seven months old little sister Ajda is her confidant. She is the one Sara loves to see by her side in the morning and their goodnight kiss is wrapped with veil of mystery and love. Their relationship is as special as Sara is. They speak to each other with eyes. And still they tell each other everything.

Sara is also a friend, she has an opportunity to show that in her special needs program in elementary school Roje in Domžale. There she has many sincere friends, companions, who help each other in difficulties and follies too. They are willing to shed tears for each other. Literally.

Last but not least – Sara is a great friend of animals and nature. That is her passion that calms her down. That gives her inspiration. That cradles her and her glance far beyond … A passion that creates new stories for her.

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Matija {Posebna lepota/Special Beauty}

Z Matijevo mamico sva se sicer videli že enkrat prej, čisto na kratko pred gastroenterološko ambulanto. Ugotovila sem, da pravzaprav živijo nedaleč stran od nas, kar je bistveno olajšalo izbiro lokacije in tudi časa za fotografiranje. Uspelo nam je uloviti nekaj tiste najboljše zlate večerne svetlobe, tiste, ki vso nežnost, ljubezen in lepoto poudari na najboljši možen način. Vendar bi tudi brez prave svetlobe in prave lokacije težko skrila vso milino, ki sije iz družinice.

Matija je star tri leta in pol. Je zelo nežen otrok in neskončno ljubljen. Pravi angelček. Dotik mu pomeni največ. Njegova mamica in očka se še predobro zavedata, kakšen pomen ima življenje samo, saj je zaradi Sandhoffove bolezni pričakovana življenjska doba otrok zelo majhna. Nimajo visokoletečih ciljev, imajo samo skupne trenutke in prav vsak trenutek življenja skušajo izkoristiti v polnosti in ljubezni.

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I’ve met Matija’s mother once before very briefly when we were seeing our gastroenterologist with my son Julijan. I’ve found out that they actually live in our vicinity and that made the choice of location and time for taking photos much easier. We managed to catch some of that best golden evening light, the light that highlights tenderness, love and beauty in very best possible way. However, I think that it would be very difficult to hide all the grace that shines throughout the photographed family even if the conditions would’nt be so perfect.

Matija is three and a half years old special boy. He is a very gentle child and infinitely loved. Just like a little angel. A simple touch means the world to him. His mommy and daddy are well awared of the meaning of a life itself – the life expectancy of a child with Sandhoff disease is very low. The family has no ambitious goals, they only have moments together and are trying to make every moment of life fulfilled and loved.

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Tia {Posebna lepota/Special Beauty}

Sončno junijsko sobotno popoldne sem izkoristila za to, da sem malce bolje spoznala Tio in njeno družino. Male deklice sicer nisem prvič videla v živo, je pa bilo prvič, da sem si res kvalitetno vzela čas, da jo spoznam.

Tia je čudovit otrok. Nežna, a hkrati na svoj poseben način zelo prisotna. Ves čas na svoj poseben način kaže, da se zelo, zelo zaveda sveta okoli sebe, čeprav tega ne izraža tako, kot to izražam jaz ali ti. Njena lepota sije od znotraj navzven. In to tako zelo, da je s svojo lepoto in nežnostjo “okužila” celo svojo družino.

Osemletna deklica ima svilnate temne lase in iskrive rjave oči, obkrožene z dolgimi trepalnicami- v mnogočem me spominja na mojega sina. Tudi v tem, kaj vse zmore in česa ne. Diagnoze nima postavljene, ampak konec koncev njeni družini diagnoza ne bi prinesla nič novega. Tio sprejemajo v vsej njeni nepopolni popolnosti.

 

One sunny saturday afternoon in June I decided that it’s about time for me to finally meet Tia and her family. It hasn’t been the first time I saw Tia face to face, but on the other hand it has been the first time I took some quality time to really get to know her.

Tia is a wonderful child. She is gentle, but again in her special way very present. In her own way she shows, thas she is very aware of the world around her, even though she is not expressing herself the way that I (or you) do. Her beauty shines from inside out. And it is shining so very bright, that she has “infected” her whole family with it.

Eight year old girl has sliky dark hair and sparkling brown eyes with long eyelashes – she reminds me of my son in many ways. For instance in things she can or cannot handle. She has no diagnosis, but on the other hand – it wouldn’t change anything for her family even if they knew what is the reason. They accept Tia in all her inperfect perfection.

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