We watch our 5-year-old daughter lose strength and health day by day. 

She should be more independent, stronger, and fit year by year, but instead, it’s the other way round… The movements she found effortless just days ago, are now hard to accomplish. These are the symptoms of a terrible disease called SMA.

It all started when Lena was 3 years old. That is when we noticed her unusual gait pattern, which resembled rocking from side to side. We worried about it, so we went to the orthopaedist. We thought it was a hip-related condition. However, the doctor said it was nothing serious, and her weird gait should soon disappear. That diagnosis put us off guard. We were sure that everything would go back to normal and our daughter would start to walk normally. 

Unfortunately, days went by, and we were more and more concerned. We felt that there was something wrong happening to our daughter. We decided to take action—we arranged tests, examinations, and countless doctor’s appointments, to detect whatever she was suffering from. We consulted many specialists, but no one was able to offer a proper diagnosis for two years. It wasn’t until Lena underwent another examination in a hospital that we finally received the diagnosis—SMA. 

Those two past years changed our lives. If only the diagnosis was made earlier, the treatment would have started on time, and Lena would have probably avoided the damaging effects of the disease. Unfortunately, I cannot turn back time, and thinking about it will not change anything. I will do the best I can to make the life of my child easier…

Currently, Lena is unable to perform any complex movements, like squats. She finds it hard to walk down the stairs, experiences balance and coordination disorders and has significantly lowered muscle tension in the hips, buttocks, and belly. 

Our daughter cannot undergo gene therapy due to her age. However, there is a chance to stop the progression of the disease with proper treatment. Lena has already been administered the second dose of a specialised medication and undergoes regular physical therapy. 

Unfortunately, our expenses rise every day, and we are running out of savings. We know that we cannot give up, though. The treatment, tests, physical therapy, and doctor's appointments are the only chance for Lena to develop normally and have a normal childhood…

Our daughter is our whole world, her smile brightens our day and empowers us. That is why I am begging you for help. Every penny brings us closer to providing our child with a better future. 

Please, stay with us…

The parents