I was born on 28.01.2011 after full 9 months by Caesarean operation with weight 3380g. My hometown is Kráľovský Chlmec. The joy of my parents was huge, I grew fast. After three months I was vaccinated, and I felt good but afterwards I realised I cannot hold my head up and straight. After regular physician check nothing was determined and that cool us down. I did well and I grew a little again, but I had troubles with moving. Later issues with breathing occurred – I inhaled by belly not by lungs.
Children neurology doctor in April 2011 determined a diagnosis: SMA type I (Werdnig-Hoffmann).
They advised us rehabilitation centre of children faculty hospital in Košice, where we underwent rehabilitation twice a week until 25.01.2012. Huge progress was made in my movement abilities, I started to move with toes and foots and could hold a toy in my hand. We were pleased but not for long, I had high temperatures, started to dribble and stopped eating. At first, I though it relates to teeth growing. It lasted for two long weeks, but the conditions did not improve. It got worse, I started to choke and blacked out. My parents started with resuscitation and called an ambulance which took me to the hospital, where I was for three days but eventually, I had to be connected to the breathing machines in children faculty hospital in Košice. One week I was in coma and then I had to undergo tracheotomy. Finally, I am at home.
This year was hard for us. Good times take turns into bad ones. Happy moments into sad. Our main goal was to create appropriate conditions to take care of our child at home with minimum doctors monitoring. That meant buying many devices, tools and expendable supplies. To that we needed help, which we received thanks to you. We managed to create good conditions for Alexandra and now the only thing left is to hope and not give up.
With great pleasure we announce you celebrating of Alexandras’s second birthday 28.1. Our success, negligible for some but huge for us and our child, is that our Alexa can breathe without devices for 2-3 hours continuously. Since even now the cure for this rare disease doesn’t exist, her life is just in God’s hands.
This year went fast. We founded a non-profit organization. Daughter grew up and we had many happy and a few sad moments. We bought a tool MOTOMED, which is used for exercise limbs. We also underwent rehabilitation near Zemplínska Šírava at hotel Chemes.