"Despite extreme fatigue and the pain caused by the injections, she has never missed even one transfusion in all these years. We used to take her to hospital every month for blood transfusions which helped her survive. We kept telling her that god would help her and she can be free from this pain one day. But now, she needs transfusions thrice in a week and only a bone marrow transplant can rid her of this pain. There is always a fleeting look of sorrow in her face. She asked me, "Amma, is God angry with me?" She fears death and I can't bear this." - Ribta, Mother of 11-year-old Sharonroja.
Painful blood transfusions have become a part of Sharon's life Sharon was just 6-months-old when she was diagnosed with a deadly blood disease. She has Thalassemia, a genetic disease that affects the production of hemoglobin and reduces its capacity to carry oxygen. It cause severe anemia and can turn fatal too without treatment. She has been living only on borrowed blood. The most happiest phase of life, childhood turned out to be the darkest days of her life.
" We are not educated, we didn't understand her condition. But we know we can't miss the transfusion. Once, we delayed it for a week because we didn't have money, she became so pale and she was almost lying lifeless with no strength to even get up from the bed. Since then we made sure she gets transfusion every month. It is a painful process. But sometimes we think she has become numb to it because she has not complained about anything. Hope was our only strength now we are losing it." - Mallika Arjun, Father.
Sharon's blood disease can turn fatal any moment without an urgent transplantSharon used to attend her classes amidst this pain and trauma. Talking to her friends and her two little siblings were the only things that gave her happiness. She cannot play for a long time because she becomes too tired and weak soon. She is now admitted to the hospital and this poor little girl is all in tears day and night.
" As if this pain was not enough for us, our younger son Sam (6) was also diagnosed with this cruel disease. Sharon has seen me begging to people for her treatment. Doctors have told only an urgent transplant can save her.She now asks us to spend money on her brother's treatment. I'm scared of the thoughts running in her mind. She thinks God is angry with her and we cannot afford her treatment, this little girl has lost all her hopes she had." - Mallika Arjun.
Sharon before the diagnosis
Father, a machine operator is running out of time to save his daughterSharon's father Mallika Arjun works as a machine operator in a private company. He earns Rs 10,000 per month. Blood transfusions alone costs round Rs 15,000-20,000 per month. For the past 11 years, he has been borrowing from everyone he knew, sometimes worked till late hours for extra income. He has always tried all the ways possible to provide treatment for Sharon, but now he needs Rs 15 lakhs for the treatment and the transplant which is just beyond his means.
"Everyday she is just going a step closer to death. I can see her condition deteriorating. Her eyes are filled with tears and fear. Her younger sister Swapna is a matching donor. But I don't have anything left with me. I'm not able to go to my work regularly. Only with this salary, I mange to feed my family. I cannot imagine losing my daughter. All she has experienced is pain. I'm longing to see her live a normal life but I'm failing her." - Mallika Arjun.