Unfortunately we live our lives taking things for granted, but when we come in contact with the misfortune of having a sick child who could die any day, one starts to appreciate life in a different way. When my son Sergey's was five-years old., we learned that he suffered from a very uncommon and unknown disease called Gaucher, which will change my and Sergiey's lives forever and effect all my family and my friends.
The main problem with this disease is that his spleen started to grow out of proportion to the rest of his organs, growing to ten times its original size, and will literally explode one day, killing him in less than five minutes. The doctors offered to surgically remove my son's spleen, so it will give him a chance to live until his early twenties, but in a wheelchair because this disease has restricted all of Sergey's physical activities. I decided to leave the spleen in place; therefore, the doctors decided that Sergey's physical activity has to be restricted: he can't play football and basketball and he is not supposed to run, jump or ride a bike. For me it was too impossible to explain to a five-year old why he couldn't do it any more. I did not want to deprive my son of his early childhood, and I thought that the best for Sergey is not to be aware of his condition. I want to make it possible for him to enjoy his remaining life like a normal boy.
Sergey's disease has caused me to change in ways that I had not imagined before. I started to neglect myself by not caring what I looked like, to forget my friends, and to isolate myself from the world. My dream apartment turned in to a grey hopeless cage, which I did not like to leave at any time. Only a mother can imagine what a women can fell when her child goes to school every say, and she is not aware whether or not he is going to come back. Regular people start the day in the morning by setting coffee and making breakfast; my day, on the other hand, started by checking if Sergey was alive.
