My coming into the world...

.Hi everybody!

My name is Lívia Roškaninová and I have been happy to this world since 13.3.2019, when I first saw the light of the world in the hospital in Snina. I was born with amazing measurements – 4530 g and 55 cm at the time when the hands of the clock stopped at 16:25 … And besides, my mother’s breath stopped – just how beautiful and delightful I was. All my family, who was eagerly awaiting my arrival in the hallway, I made know with my loud cry that I was finally here, among them. Everything was all right after my arrival – my mom and dad were very happy about me.

 

 

 

In short, I was a pro in sleeping!

 

Imagine,  during the day and also at night, was sleep my favourite activity. However, as the months passed, and I grew into  more beauty and health, sleep became my best friend. Well, at least my mum says, I seemed to be sleeping very often … I have to say, I was little bit lazy. My mom, grabed things  in her hands and in the fourth month, due to my malaise and sleepiness,  visited my doctor. . My mother, holding me in her arms, stepped into my pediatrician’s door, suspecting something was wrong. Oh yeah, and then it all started … Millions of question marks in the eyes and a merry-go-round of further examinations.

...And we are at the beginning of our fight...

            You ask where we started? The first recommendations of health professionals brought us to a local rehabilitation center, where I had to deal with the methods of Uncle Vojta. Well, let me tell you! Those Vojta method exercises are a real hit for me to these days. But what else did we have? My peers have already managed to keep their heads high or even turn on their back in this period and I wanted to be like them. Well, as they say, there are no cakes without work. 

On the day of my fifth month we had another examination. When I was born, they didn’t do me sonographic brain examinations, so I had to go back to it. However, the doctor’s sentence was a suckerpunch to my mother and dad … Listening to the doctor’s bitter words, “I have never seen such a brain in my life – either you find a disease or unfortunately”, they both could not believe in their own ears. Mom cried heartily, my dad was holding her hand, and they both felt as if someone had stabbed the sharpest dagger into their hearts … He was followed by a series of other examinations, blood and urine tests for the needs of a metabolic ambulance. We were still walking somewhere, we were still practicing, and my parents really cared that I, their greatest love, will be a healthy and happy baby.

...Today we know the diagnosis...

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   We waited a long time for the results of the examinations that we underwent until one day in Dad’s phone call, “Canavan’s disease”. This was the likely diagnosis that resulted from my urine analysis. Canavan…. … I know you have probably never heard of this disease before. I am not surprised, it is such a rare disease worldwide … Like me – My parents  look me in the eye every day and always tell me I’m not sick – I’m just sspecial . 

 

 

I am more precious than any diamond in this world! But … You know what I don’t really understand? In one of my mom’s and dad’s interviews, I am supposed to be here in this world jast for 10 yearsWhy? Why should I live only 10 years? You know, I’m just a little body, but believe me, I have a huge heart – I love my family and they love me. I wish to stay here with them forever, to love them, to please them and to paint smile on everyone’s face as I can do it everyday!