“Amma I don’t want an injection. I will be a good boy and won’t be naughty! I promise Amma! Please don't let them hurt me," says 5-year-old Kamalesh as he thrashes around trying to get out of his mother's grip at the hospital.
Kamalesh has a disease that was once so rare, but now common in India. Thalassemia. He becomes extremely anemic every few days and needs blood transfusions. Kamalesh believes that gets the needles as a punishment. He is so scared to make a mistake afraid that his parents will take him to the hospital. He does not know that he cannot survive without these treatments.
Within weeks of birth, the family noticed that Kamalesh was anemic and often very tired. He showed difficulty in breathing and his eyes became yellow in color. They took him to the hospital immediately and it was then his parents knew his little boy has Thalassemia major. It usually happens when both the father and mother carry the gene. In India, marrying within the family is so common that several children are affected by this disorder and unfortunately, it takes an emotional toll on the family.
Doctors told that my boy should get blood injected through tubes once in 21 days or else he won’t live.
"Kamalesh is an active and naughty boy. He won’t stay inside the house even for a minute. Whenever I visit his school , his teachers complain to me about him being naughty. It means he will get tired more quickly, that his hemoglobin will go down faster. When it does, he becomes a different person. He becomes too weak to even to stand up. He stays in the bed all day and doesn’t even come out when his friends invite him for a game." Radha (Mother)Transfusions are not a cure. They fix the problem temporarily. More often than not, this is all families can afford with each session costs up to Rs. 5000. However, it is also a treatment that could kill the child. Iron overload in the body damages the liver and heart. Due to this, the family is forced to opt for chelation therapy, and expensive medication. Even with this, there is a high chance of organ failure. Radha and Mohan are now left only with one option if they want to save their son.
"It’s been five years since we have been taking him to hospitals once in 21 days for this blood treatment. And even now he cries and refuses to go to the hospital, afraid of the needles. I want to end this pain and see him live a normal life like others. Doctors have told us that the only way to do it is a Bone marrow transplant. Without that, he may not live long." - Mohan, Father
He wakes up in between his sleep, crying and asking us not to take him the hospital for an injectionBone marrow transplant will require a donor and once the transplant is successful he will need to undergo chemotherapy. The whole process will be painful and excruciating but at the end, it will give little Kamalesh a life where he doesn’t need to suffer more and lead a normal life. His father will be his donor and the transplant will cost around 20 Lakhs.
"I was happy for one moment when the doctor said there’s a surgery that will cure my boy’s disease completely. I thought God has finally answered my prayers. But when I heard about the cost, my whole world crumbled. I work as a mason who hardly makes Rs. 10,000 per month. Out of that money, I have to spend 4,000 for his monthly treatment. With the rest, I have to look after other expenses and feed my family. How is it even possible for someone like me to pay such a huge amount?" - Mohan
This little boy could lose his chance to fight the rare disease that is haunting him since birth. He may not have even a minute's peace. Your help can save him.