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“Right from the moment he wakes up until he goes to sleep at night, my child is restless and irritable. He is always groaning in pain. He is in my arms all day…I try to soothe him, but it does not seem to work. Seeing him suffer affects me mentally, and I cannot go about my chores properly, which in turn affects the whole household. We want him to get better but his treatment is far out of our reach.” - Sheetal, mother.
Sheetal and Sagar’s baby boy is a little over a year old. Whenever visitors come to see him, he is either always crying or running out of breath from crying. People give the young parents all kinds of advice to ward off the ‘evil eye’ that they think is causing him distress. But these parents know the sad truth of their child’s condition – he suffers from a rare blood disorder called thalassemia major, which causes an underproduction of hemoglobin in the body.
He is too weak to even express his pain properly
The first time Sheetal and Sagar noticed that there was something off about their child was when he was just over 4 months old. His body had started turning pale, and it seemed to become stiff at intervals too. He had to be admitted to the hospital for over two weeks because he had collapsed, his body almost shutting down in the process. The child was diagnosed with the blood disorder later, and has been undergoing monthly blood transfusions ever since.
“In the beginning, he would get better after getting blood every month. But now, his weakness has become permanent. He is not eating solid food at all; all he does is suckle some milk. He is very weak and cannot even cry properly due to a lack of energy. His body is failing him.” - Sheetal
He needs an urgent transplant, but they cannot afford it
Sheetal and Sagar were told that there is only one permanent cure for their child’s condition – a bone marrow transplant. But the procedure is expensive, and costs lakhs of rupees which is beyond the reach of this poor couple, who come from a rural background. Sagar is the only breadwinner of his joint family, consisting of his wife, son and elderly parents. He does not have a stable job; he tries to feed his family by doing odd jobs around the village and also engages in farming which does not yield fair returns.“Every month, blood transfusions and medicines cost me 3,000 to 4,000 rupees. I don’t earn that much – I arrange that amount by begging and borrowing from relatives and neighbours who understand my plight. Every year, I make a meagre profit of 20,000 rupees from farming which is then entirely spent on my son’s treatment. I do not have any way to arrange the enormous amount that is needed for his bone marrow transplant. Please help me.” – Sagar
With your kind help, these parents can gift their child a pain-free life. Click here to contribute.
Identity of the child is protected in adherence to government guidelines.
