My name is Kubík and I would like to tell you my story.
I was born a premature (33+2tt) but healthy baby. I wasn’t even 2 kg and only 46 cm, so I had to stay in the hospital for the first 14 days all alone, as I needed an incubator. My mother came to see me every day. Sometimes she could stroke me, hold my hand, hold me in her arms and later change and feed me. For the next 14 days she stayed together with me in the hospital. The doctors waited until I was at “table” weight before discharging me to go home.
At home I made everyone happy. I was doing well, started to kick about with my feet, play with my hands, and lift and hold my head up while on my stomach. But that changed when I was half a year old. Suddenly my head was too heavy to lift up. My legs stopped obeying me and I couldn’t move them. And when I lifted my arms, they immediately dropped again. My overall physical condition got worse. My parents took me to my (at the time) pediatrician. Her opinion was clear. Kuba was born premature and a boy at that, so what do you expect? He’s just lazy.
My mom and dad immediately looked for a new pediatrician. They found one. As a bonus, the new doctor was a specialist in premature babies. The new doctor didn’t hesitate and immediately sent me to neurology. After being examined there, they said I needed an EMG. After the test, the diagnosis was clear - SMA - spinal muscular atrophy.
The doctor at the university hospital told my parents: “He will never move his legs again, his arms will stop moving after that. Then his breathing will stop and so will his heart. Don’t plan a second birthday for him. He will die. There is no cure.”
After returning to the neurology department, we were told that all three of us had to have blood tests to confirm the disease. Despite the doctor’s sentence, we all got our hopes up that he had simply made a mistake on the EMG test. We waited several days for the results. After about a week, dad showed up at the door with tears in his eyes. “Kubík is sick, he has SMA.”
My parents were not going to accept this and started looking for a way to save me. There’s no way I could leave the world after only just arriving in it.
Through social networks, my mother met another mother, Šárka, who also has a little fighter who is as sick as I am. Aunty Šárka guided my mom through the most difficult period. The most important information we got was that there is treatment. We just had to go to Brno for it. In Brno we met other doctors - pediatric neurologists. I had to undergo further examinations to see if they could give me medicine. They could. This is to thank the pediatric neurologists and nurses at the Children’S Hospital in Brno who were responsible for the really fast procedure and efforts to start me on the treatment so soon.
On 16. 2. 2021, I underwent Zolgensma gene therapy. It was administered to me in the form of an infusion. It will not cure me completely as irreversible damage occurred to my muscles during the course of the disease. This treatment, however, can improve my condition; ideally slowing down or even completely stopping the progression of the disease.
I was eight months and seven days old on the day I was given Zolgensma. I know that I am lucky in adversity because of this treatment. Since this treatment has been here for a short time, the doctors believe that one dose will be enough. We believe so too. And for this I thank my health insurance company, which has paid the more than fifty million crowns that the treatment costs. Thank you!
However, despite the best care of the doctors at the Children’s Hospital in Brno and use of gene therapy, the disease did real damage to my body. But I’m a big fighter! I have great physiotherapists helping me with my fight, who have me in their care regularly. I visit different rehabilitation facilities every day, where I do exercises such as bobatha, neurorehabilitation, snoezelen, the Vojta method, swimming or hippotherapy.
Thanks to all of you who have read my story and to all of you who can help me by sharing, exercising or making a financial contribution so that I can continue my rehabilitation in these facilities and buy the necessary home equipment to help me grow properly and make my life easier.