It feels like having no blood in her body wasn’t enough for my little girl, Sanika. Every time we go to the hospital there is some bad news awaiting us. Blood transfusions over the years are taking a toll on my child. Iron deposition in her blood has already caused her liver infection. Now she also has Hepatitis B. I don’t know how much pain my child has to endure.
Sanika is our younger daughter and seeing her suffer so much makes Anita and me feel defeated every day. Her sufferings started when she was barely 1. She was white not because she was extraordinarily fair, but because she had no blood in her body. In the first go, we found out that our baby had anemia. But several tests, several hospitals and a lot of injections later we found out that our girl had a disease we never heard of, Thalassemia Major. This is a condition where the body is incapable to produce red blood cells.
Since Sanika was a year and a half old, she has been taking blood transfusions every 15-20 days. Now even at the age of 6 years, she has not been able to accept this as her life. Sometimes she cries and shouts begging us not to take her to the hospital. She doesn’t want to live on injections and medicines.
But even the transfusions, which were once a life-saving method for her is now slowly taking her life. Blood transfusions have caused iron concentration resulting in her liver getting damaged. Without a bone marrow transplant, it will be difficult to keep her alive for long.
Our 11-year-old daughter Divyani is a 100 percent match for Sanika. Even Divyani is too scared to even think that she might lose her younger sister. The two are inseparable. When Divyani goes to school, Sanika keeps on asking why is her sister away from her. I am scared to tell them that I might fail to keep them together.
Sanika is so weak that she can barely walk. Even at the age of 6 years, I have to carry her. It’s painful to see her not grow like other children her age. We have not been able to put her in school. Sanika wants to do everything, she has a strong urge to live. I feel guilty for failing her every day.
I work as a laborer in a small shop that fixes punctures of bicycles and motorbikes. On usual days I earned Rs 6000 a month. But with Sanika becoming more sick, I have to skip work for days. Just to ensure that my income doesn’t stop, I have to beg my employer to keep me at work. I might lose my job any day. We have to spend on treatment so much that our household runs on debts. I have no idea when will I ever be able to repay back.
A huge amount of money is spent on Sanika’s medicines and transfusions every month. There’s an increased cost to bring down her creatinine and iron levels so that her body is capable to endure the bone marrow transplant. I have managed to arrange Rs 1.5 lakh. But I find no other way to arrange any more money. Her condition is deteriorating every day and if I fail to save her I will never be able to forgive myself.