We ask for your help, to improve his
life.
 

Our story

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two years ago, on March 11th 2018 to be precise, our only child - our son Milánek was born. To our great joy, he was born very quickly and without problems. All was done within two hours of our arrival at the hospital. Milan was healthy and there were no signs to indicate what was going to happen . During the first six months of Milan's life there were some common, normal problems  such as jaundice, non-production of breast milk, head predilection (head to the side), gas, pain from teething .... due to the predilection of his head we had to start practicing Vojta's method  of physiotherapy (so-called Vojtovka) in the third month. Mummy exercised with Milan faithfully, 4 times a day, which was very difficult for everyone. Milan absolutely did not want to cooperate and the exercise itself was (and still is) very mentally and physically demanding. It takes several weeks to learn to do it properly and it teststhe limits of a person´s  mental strength . During the day, one can do nothing but plan all necessary daily activities such as preparing food, cleaning and taking care of baby around the exercises. In addition to this, if your child can never get proper sleep as a result of his condition, it becomes very exhausting. But the worst was yet to come..

After returning from Prague, we tried to swallow the bitter pill and accept the assessments the doctors and other experts had given us so far (which we have not been able to do as yet). We immediately found a different neurologist. Then we went for a few more examinations and after many weeks of nerve-racking waiting, they confirmed the harsh truth: our son has a disease we had never heard of before - Spinal Muscular Atrophy of the second type. It actually isn´t a disease, it is a genetic disorder. If a doctor happens to read this, he or she  will most likely want to correct my explanation but I will try to say it simply ... the so-called motorneurons which control the contractions of muscles in a person´s  body don´t work well and they gradually degrade and die out. If you don't use your muscles, they weaken. This is exactly what happens with this disorder. The weakening happens at a different rate of speed for each individual  but the general rule is that the sooner the disease manifests itself, the worse the outcome will be . There are four levels of severity, Milan has the worse version of category two. Category one is the most serious type. The worse version of category two means that, at the age of one year, Milan had difficulty keeping his head up and he was able to roll from his back to his stomach and back. He could not sit up or sit without support, he could not crawl, he could not draw his hands to the crossbar, he could not turn over  at night when he was covered by a blanket. Such children have very weak muscles in their whole body, their condition gradually deteriorates to the point at which they just lie in bed, can not talk, need to be connected to a ventilator to assist them with breathing and they are on artificial nutrition at all times. Any common cold can develop  into pneumonia because they have weak respiratory muscles and cannot properly "cleanse" their lungs by coughing. They also have sparse bones. Possible fractures are a huge problem. They all have scoliosis and other deformities of the spine, which worsen over time, so they also undergo operations in which they insert rods into their bodies to straighten them .... nothing works well. As a parent of a child with SMA, you must make a huge effort to slow down the disease and at the same time live in permanent fear of unexpected complications. Now, after a year of knowing this diagnosis, mummy  still cannot come to terms with her son's complicated future and suffers from major depression. Father had to start working from home. One person cannot take care of a child disabled in this way without additional help.