Even in our worst nightmare, we did not imagine our child would have this kind of disease. They said it is a genetic blood disorder called thalassemia major. Pradip and I never completed our education. We barely processed what we were hearing. We did understand this – that Soumen would have to go through a lifetime of pain, and we would even lose him to this disease.
The solution sounded so simple. Blood transfusions. He needed it every week to stay alive because his body does not produce healthy red blood cells. It is as if every organ will suffocate and die if he does not get blood on time.
We went on like this for 3 years. At first, we would have to take Soumen to the hospital every month. Slowly, I began noticing that the frequency increased. He was growing up. His body needed more energy. Due to the frequency and quantity of blood Soumen has been receiving, he is at risk for receiving blood infected with hepatitis C. Every day of these past 3 years of Soumen’s life, we have counted as a blessing. We lived in fear of losing him to hepatitis.
Recently, during one of our hospital visits, I learned that Thalassemia can be cured a procedure known as bone marrow transplantation. This means, my son does not have to die a little every day or be poked by needles every week. He can have a childhood, play with friends, go to school and be normal like everyone else. I was so happy. Then, I heard that this transplant is going to cost us about Rs. 25 lakhs. With Pradip earning just Rs. 3000/month, there is nothing we can do to save our little boy. We are already in debt for the past 3 years, having to pay his medical bills from borrowed money.
We went referred to Bangalore when Soumen’s condition began to deteriorate. He is such a chatterbox and the disease rendered him speechless. My little boy could not even lift his head off the bed. Pradip watches him as if we will lose him any moment. Soumen needed chemotherapy, but we could not even afford that.
We were unable to make a decision, but Soumen’s condition forced it out of us. Still uncertain about the treatment, I gave in to the chemotherapy. I saw how the treatment helped Soumen. Most of the terrible symptoms faded for a few days. But the doctor told us this is only the beginning. The chemotherapy is just to help his body adjust to the bone marrow transplant. If we still delay, we will lose Soumen.
Soumen is just 3 years old. He needs a chance to live his life. I want to do everything I can to make that possible. We had to come back to West Bengal because we lack money to even stay in Bangalore. I am now begging everyone I know for help to save my little boy. Please, give us a fighting chance to save our son.
Pradip works on a brickfield, carrying and stacking bricks all day for a mere Rs. 100 wage. Bithi is beside herself in pain. With your support, this couple can save their baby boy’s life.