Three years ago my son was diagnosed with progressive Duchenne muscular dystrophy. The child that used to walk, run and swim had lost the ability to stand upright within three months. Now he can’t even crawl. His legs don’t straighten in his knees, he can’t lift the legs either.
We are a family of four: my son, my daughter Katya and my mother. My daughter goes to school, she gets a pension for loosing one parent of 2,882 rubles. My son gets a disability pension of 5,763 rubles. He doesn’t get the pension for loosing his parent, because the children’s father died before Tolya was born. My mother’s retirement benefit is 8,242 rubles and I get social benefit of 1,200 rubles. I cannot work, as my son needs my constant care.
I need to buy all the drugs for Tolya, we never get them from the government. Doctors refuse to hospitalize him, as there are no drugs to help him. Another problem is a wheel chair. We did get it for free, but we can’t use it where we live. All the roads are not paved, so the wheel chair gets stuck on every rock. My son hasn’t been out for 4 months. He also needs special shoes, because his feet constantly deform. Social services refused to help us to buy those shoes, explaining it with the fact that my son can’t walk anyways.
I am very well aware that the disease is incurable. I know that soon his arms will stop working, and then the inevitable will eventually happen. But I really want to postpone it as much as possible, to prolong even this broken life that he has. Tolya likes to draw, to make figures from modeling clay, to read books about animals, to collect teddy bears. He is home schooled, always looks forward to seeing his teacher, although it’s hard for him to sit through classes.
We never asked for help, always trying to do everything on our own. But when it got really hard, we asked social services for helping us buy orthopedic mattress for Tolya. The advice that I got from those people is to give my son up and take him to a foster home for «kids like him». I felt very upset that me and my son were alone in this fight. Kind people told me about this charity fund. Please, help my son. I believe that kind people exist in the world and that someone will respond to my cry for help.