It’s horrible when the salvation of your beloved child is really close, but you can’t have it anyways. We live in a remote village near Amur river. It is very hard to get professional medical help. My son is already 12 years old, but only in April of this year did we find out about his genetic fatal disease.
First thing we did was trying to declare disability. Without being recognized as disabled, my son would never be able to get any medications for free. He wouldn’t be able to go to the Russian Children’s Clinical Hospital, where the doctors could find the correct treatment. Unfortunately he was denied the disability. They told us to come back when he’s in really bad shape. I still can’t believe the doctors could say something like this to a mother. They are supposed to save the lives and health of people, and not wait until the person is «in really bad shape».
Meanwhile pseudomonas aeruginosa (infection in the lungs) have been spreading all over my son’s organism. Along with constant cough and overall sickness my son had fatigue. He lost interest to everything: his school, his friends, his life in general. He wasn’t used to the thought of being sick like other children with cystic fibrosis who grow up knowing about their disease. I don’t know what was worse for him: being diagnosed with terminal illness or doctors’ cruel attitude. We realized we couldn’t rely on anyone.
It took me a lot of effort, but I managed to put my son in the Clinical Hospital in Moscow. A few days afterwards Sasha changed incredibly. He met children in the same situation and believed that not all is lost. He believed that one can live with cystic fibrosis and there are many interesting things in his future. He now knows there are doctors whose job is to help people like him.
Within 6 months our life has completely changed. What was important before the diagnose has lost its importance, and other things have came on top of the priority list. Now every day I have to think what I can do to prevent my son from getting sick. It is possible, but unfortunately the necessary medicine is hard to get where we live. One course of TOBY is capable of treating pseudomonas aeruginosa, but it costs 237,000 rubles (9,000 dollars). We can’t wait and hope it will be funded by the government, as any delay will hurt Sasha. I also cannot afford this medicine. I’m a single mom and my monthly income is only about 5,000 rubles (165 dollars). Please, don’t turn away, help Sasha! He needs it now more than ever.