My story

"I was born June 7, 2018 in Ostrava. My arrival into the world was fast and hassle-free. I got my beautiful name from my uncle, who unfortunately is no longer with us. Daddy loved him very much. All indications were that I was a healthy baby. A few days after birth, I began to suffer from large colic, which bothered me for four months. I was a very weeping baby. I was giving my parents hard days and nights. My mother spent hours breastfeeding me because it just calmed me down. She's always felt like something's wrong with me since I was born. Even though the people around her were calming her, she said I was just different from the others. She was trying to blame the fatigue and postpartum depression. However, I grew beautifully, gained weight, developed the required body movements and didn't mind being on my tummy. So my parents were looking forward to me growing up, and their patience with me would come back to them. When my sister started going to kindergarten, I started catching all sorts of germs from her, but I had to deal with it. However, the cough was different, supposedly asthmatic, which is why I had to have anti-asthmatic medicine called 'Ventolín' for regular syrup.  When I was six months old, however, I got a cough that didn't just leave. The ordeal lasted three months and was only stopped by antibiotics. At that time, I was able to roll over my tummy and back, which I learned by rolling from one side to the other and over. My mother didn't put her sister in kindergarten that year. We all needed to gain strength and mum was scared of me going through another disease.

 

I was 10 months old when my constant crying started to calm down a little bit. Still, I couldn't stand still outside, at home or in the car. My parents were really tired and desperate. Plus, crawling still didn't come. I couldn't even pass the traction tests, which the doctors ignored. I also tilted my head strangely from time to time, and I hit into it. At 11 months, I started going to rehab. The doctor was concerned with some of my movements, so she told my parents to make an appointment for neurology examination just in case. My mother exercised with me properly and regularly, but the result did not come. I was trying really hard. We exercised so much that I was able to stay in the second upright position or on four for a while. As I lay in the stroller, lifted in a higher position, I was able to sit down on my own. But I did it once, twice, and then I couldn't. My mother began to notice that I was not able to lift my head when I was lying, I didn't manage to pull on the cot, I couldn’t get out of under the duvet and I turned a little in my sleep. Over time, my head check also deteriorated, which I began to tilt back. We started to suspect that it wasn't going to be just that, and there was a big problem.

 

Mom's bad feeling was gaining intensity. She was getting more and more nervous. At 13 months of a check-up, in rehab, it was clear to the chief of the hospital that something was very wrong. I was sent straight to my paediatrician, who took my blood. It turned out it was okay. Everyone was relieved, some even started treating me as retarded, though. But my mom was not relieved. Even though the paediatrician told us that genetic diseases could be recognized from a normal blood test, she probably didn't have enough valid  information. My mother, meanwhile, started to search on Google and became suspicious of my illness.

When I visited the EEG, the neurologist saw me, and since she's a real expert, she began to suspect from the body movements what was going on. She was so kind as to take us as a priority. She asked her parents a few questions and found that mentally I was very developed (I'm interested in cars, music, books, I'll show how big I am, I know some basic nursery rhymes, I can answer how I am, I  can clap with my hands, I'm very inquisitive, I have a beautiful tweezers grip...).Then she was the first to say it was that ugly diagnosis of Spinal Muscular Atrophy I. My parents hoped until the last moment that it wouldn't be true. In our family, it was time for tears, depression, stress and dreamless nights. My parents' misfortune was compounded by being worried about my older sister. Unfortunately, further examinations such as EMG and genetics confirmed the disease. It turned out my sister was healthy, but I was confirmed with a milder, yet serious type of illness. At 14 months, I was diagnosed with Spinal Muscular Atrophy II."

The diagnosis was too overwhelming for us. We were only lucky that Maxik had such a supportive nurse that didn't make fall into despair. Suddenly, the world stopped for us. We felt like there was no point in anything, everything was kind of flowing around... that feeling of despair and pain is indescribable to anyone who hasn't experienced it. Especially, when at first we were told that Maxik was going to die within 2 years, because the neurologist told us he had type I, which luckily wasn't confirmed in the end. Then the feeling of despair was replaced by anger from a ruined life. A person goes through several stages in such a life situation. In the end, we realized that we had to work, take it as it is, move on and fight. The pain in our hearts will remain forever. How many times do tears come to our eyes when we see a healthy boy running around the same age. Sometimes there come the times when we cry, but then we put it back together quickly. Because despair and crying won't help us fight. We are trying to take a positive approach that helps us move on. We've reconsidered our entire life so far, and we're trying to be supportive of each other. Genetic diseases are always serious and we are happy to live in a time that offers us at least some medicine and a way to fight the disease. Maxík is an amazing, cheerful and bright guy who loves mainly cars, music and animals. When he smiles, snuggles and hugs us around our neck... nothing is more important in the world. Every moment spent together is worth it, and that's what life is all about! Plus, he's a warrior with body and soul, and he just doesn't want to give up. We are convinced that it was the weeping that we experienced when he was a baby that he wanted more than his body allowed him to. Our wish is that Maxíček becomes self-sufficient thanks to treatment in combination with rehabilitation and to live to a normal age. We're going to fight hard and we're going to do everything we can for him. Even though fate didn't wish him well, we want to live life as it is and enjoy it.

Thank you for all your support, whether it's a kind word or financial support. Both are important and we appreciate it immensely. You become part of our struggle and give us more strength. We thank you with all our heart...

Simona a Jiří Moslerovi, Maxík's parents