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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