Our Story

People get into situations they had never thought they would have got into. Perhaps everybody has gone through that. And so have we. A few months ago we were busy dealing with completely different things, much nicer and more pleasant ones. In fact, it was quite idyllic – we were a happy family, we built ourselves a house, and awaited our second baby. My wife, our daughter and me were looking forward to the newborn, we were choosing the name and we imagined how our life will be when there are four of us... We managed everything... and here he is, little Vladko, he’s two months old, he is beautiful, healthy, and we want to enjoy all the small things of daily life... However, out of blue, we have to cope with an entirely new situation on the go. New and quite incomparable with the previous. Our little two-year old daughter Sibylka walked...well, a couple of months ago she did. She was born absolutely healthy baby, on time, without any complications. No pregnancy test results showed any indications of a potential problem. We were happy not to face any baby illnesses or disorders. Siby began walking when she was one year old. Only gradually we started noticing there’s something peculiar about her walking. It became a bit clearer when she was about one and half year – her walk was becoming duck-like, she was getting more tired, and she only managed to walk shorter distances... The long chain of medical tests consumed a lot of time indeed, time enough for Siby to stop walking totally. And then, on Wednesday, March 13, 2013, at the Roosvelt’s Hospital in Banska Bystrica, we learned the result of genetic tests we had been been waiting for two months; and the result was the diagnosis of spinal muscular atrophy, type 1 (SMA I.)!

The fact we did not break down is a miracle itself. And that we will never accept that, it’s a fact. Your brain shoots one thought after another until you are unable to process them. You try to suppress, to minimize the ugly ones but it’s not easy. You would like to never have heard that news, forget the day when you were told such a thing...

With shredded fragments of positive thinking we managed to pick together, we have mobilized the last bits of power and we’re trying to find out as much as possible about the disease, we’re trying to contact people who could advise and help....

We haven’t said yet that both of us, parents, are teachers. We built a house by ourselves, putting all the money, skills and energy into it. No, we haven’t inherited fortune – as most ordinary people we had to take a mortgage, thinking – at that time – we will, somehow, manage to live through the days. Being happy with little, giving our children nice surrounding to grow up in. We were covering extra expenses with husband’s working late in another job after his teaching. However, Sibylka’s diagnosis has changed things so much that we come short of solution. The baby boy is three months old, he needs absolute and permanent care of his Mum. And our girl – according to the medical specialists‘ information – needs to exercise, exercise, and exercise... every day, throughout the day, in short intervals, because she tires down very quickly. After stays in hospital she is fixed to Dad, and she feels more secure with him also when exercising that we began practicing immediately in order to prevent her muscles going completely limp. We are only gradually putting together information on special aids and equipment that Sibylka is going to need to help her keeping the muscles working. At least partially...

We simply need to be BOTH with the kids, for at least a couple of months, until little Vladko gets stronger, until little Sibylka learns to co-operate in exercises with someone else than her Dad, until we manage to get hold of so called verticalisation device that will enable Sibylka to keep upright, and walk.

In short... we need some time and some money to cope with this all new situation and conditions. Not to speak of strong will, hope, belief... We have to, and we want to manage. Together. The whole family. But we need your help...