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“She is comforting us. This is a terrible situation. I should be protecting her, consoling her, doing something to take away her pain. Instead, she is telling us not to worry, that whatever happens happens.”
7 years old, Tejaswi is a precocious young girl who will explain everything about the dreadful illness afflicting her in great detail. Her unwavering spirit and active demeanor will never give away the fact that she has aplastic anemia. Her parents are struggling to fund the treatment that can save her life.
Moles can be dangerous
“She got a coin-sized mole on the back of her hand. At first we thought it was normal, but as it got bigger, we went to the hospital. The blood test showed a platelet count of 34000. Our doctor asked us to take her to Apollo Mysore. In a day, her platelet count dropped to 6000. She was admitted for 9 days and no treatment helped her. They moved us to NH Bangalore.”
After 3-4 days observation, Tejaswi underwent more investigation for her condition. Her platelet count kept fluctuating. The report revealed that Tejaswi has amegakaryocytic thrombocytopenia, a rare genetic disorder where her the bone marrow cells necessary for producing platelets are low in number. What’s more, her disorder is evolving into aplastic anemia, where her bone marrow is failing to produce all types of blood cells.
Bruises could kill her
“She can’t go out and play. She can’t fall or get hurt. An infection, a bruise, anything that causes her to bleed, or blood to get affected can kill her. She began bleeding from her mouth, and we were so scared. The doctor said it will get worse with time, and only a bone marrow transplant can save her now.”
Nagaraju, the father, works at the police department. On his Rs. 16000 income, there is not much he can do, especially after spending over Rs. 4 lakhs on his daughter’s treatment. He is knee deep in debt, and cannot afford Rs. 30 lakhs for her bone marrow transplant. In fact, Nagaraju cannot even afford to stay in Bangalore for Tejaswi’s weekly transfusions.
We stay at the bus stand because we cannot afford a hotel
“I take the day off on loss of pay. We leave Kollegala at 4 in the morning. It is a 4-hour journey from here. The hospital is 2 hours away from the bus stand in Bangalore. We head there straight away, get the treatment, return to the bus stand by 9 in the night and catch the last bus back home. If we miss that bus, we stay in the bus stand until morning when the first bus leaves. We have no relatives here, so this has been our routine.”
The travel is taking a toll on Tejaswi’s health, but this family cannot afford any other option. Their relatives are daily wage laborers who are struggling to make ends meet, leave alone help Tejaswi. Despite all the negativity, this little girl is maintaining a positive attitude.
“It’s alright, it is ok. I’m going to be ok. So what if I have this disease. Don’t think it is the end of the world. Whatever happens, happens. I will be fine with it. I am not scared, Appa.” – Tejaswi
