“I knew cancer was the worst kind of disease. If it hits somebody, it doesn't leave before killing the person. But when I got to know that my 9-year-old daughter, Sesha has a disease more fatal than cancer, I didn't know what to do. She has a liver dysfunction, her platelet count has dropped so much that she is anemic. This disease will slowly fail all her organs and will kill her. She often cries to me, asking why God is punishing her. As her mother I can't even take her pain away,” Jayanthi, Sesha’s mother.
A rare disease has taken a huge toll on little Sesha physically and emotionally
Little Sesha doesn’t know why is her hair falling out. She just wants to go back to school and play with her friends. Her friends no longer play with her because she is barely identifiable now. She has lot her hair and has put on a lot of weight. She gets tired very easily. Sesha has hemophagocytic lymphohistiocytosis, a cancer-like condition in which the body develops too many immune cells and a dip in the production of platelets in her blood. She is also anemic because of this.
“I can't stay with my daughter at the hospital. I am not educated and I can’t understand what the doctors say. My sister stays with her at the hospital and takes care of all the medical necessities. I am scared that someday I will go to the hospital and see her dead. I know her disease can kill her anytime.”
Years of medicines haven't been able to make Sesha any better
More than 4 years of strong medicines and treatment has not been able to make Sesha any better. It has only worsened her condition. Only a bone marrow transplant can save her now.
“One fine day in 2014, the only problem that my little girl had was fevers. I thought it must be viral fever or typhoid or malaria. I couldn’t think of anything worse than this. But when the fever didn’t go even after a month, doctors asked us to do a DNA test. This is when we found that a rare disease is taking over her and is leading to multiple disorders.”
Due to lack of money, Sesha hasn't been able to get a transplant for 4 years nowWhen Sesha was first diagnosed with the disease, the doctors told her that she needs a bone marrow transplant. In spite of struggling to gather funds for months Jayanthi and her husband, Satyanarayana couldn’t gather enough to get the transplant done.
They had kept her under strict medications hoping that she would be better. But now her condition has deteriorated so much that without a bone marrow transplant she will not survive.
“My elder son, Janardhan is the donor for Sesha. But even he doesn’t know what has happened to his sister. All he knows is that she needs clean blood and only he can save her. It is very difficult for us to make him understand the situation.”
Money lenders knock on their doors and insult them every day
Satyanarayana works as a small laborer and earns merely Rs 350 per day. He is not even able to be with his daughter while she is dying. He has been struggling very hard to gather every rupee.
“We have already spent Rs 8 lakhs in 4 years. My husband doesn’t even earn that much money. We have sold the land and the gold that we had. We are in neck-deep debt. We haven’t been able to repay the existing loans and now we need another Rs 10 lakhs.The lenders knock our doors every day and insult us, but we are ready to take any pain to save our daughter.”
How you can help
9-year-old Sesha is struggling from a rare disease which is worse than cancer. Medicines are no longer enough for her to survive. She needs an urgent bone marrow transplant.
Her parents are desperately struggling to find a way to save her.