At 14, nobody deserves to live in fear of death. My brother could also be harbouring dreams for his future right now. The worst part about being ill at this age is the restlessness one feels at the thought of how life could have been if it was not so full of trips to the hospital. The idea of that beautiful life in the classroom, or the playground troubles him too. Hafijur’s biggest dream is an ordinary life, like the one his friends live.

My name is Safikun. I am Hafi’s elder brother. For ages now, I have been seeing our eldest brother Rabin fight the same condition. We could do nothing for him. He is now 31, and still lives like he is dying everyday. I thought life could be different for the little one though.

“Hafi was just a 1-year-old when he was diagnosed with Thalassemia Major. This means he needs to be given blood eternally to keep him alive. His own blood becomes toxic for him, and he cannot survive on that,” Safi recalls

Despite the weakness, Hafijur still tried to go to school whenever he could. Bright and curious 14-year-old Hafi got promoted to the 7th standard this year. For the past 6 months, however, he has neither gone to school, nor met his family. Away from his home and his friends, Hafi has been living with his older brother in Bangalore, hoping the illness will be cured soon.

My father runs a vegetable shop in Assam. Our household income is between Rs. 8 and 10,000. With my elder brother in this condition, he also cannot work, and needs regular transfusions.

Our Assam government supported us a lot. It is only because of them that my brothers are still alive. I myself give blood for Hafi’s transfusions, but can do so only 4 times a year. We heard that a Bone Marrow Transplant can save him. Again, I was a perfect match. With the help of government funds, he did undergo the surgery, but unfortunately his body started rejecting the transplant.

Now, there is a need for an urgent Bone Marrow Transplant again. The procedure will cost around Rs. 24 Lakh. My family has never even seen this much money. On the other hand, Hafi is hopeful, waiting to recover and go back home to Ammi and Abbu.

It is still possible. My brother can also have a normal life, a normal teenage: without fearing death and having to go to the hospital every week. I have seen my elder brother’s life get wasted before my eyes, but cannot let Hafi also get pushed into this vicious cycle.

The doctors say that there are kind hearted people who come forward and help people like me and my brother. Please put an end to our exile, and help me take my brother back home without this curse.