5-year-old Amar Mandol with his mother. Amar is suffering from a rare disorder, Hunter's Syndrome and needs financial help for his treatment.
Hunter's syndrome is a rare, very rare disorder. Among some 2000 people across the world who have the disease, is five-year-old Amar Mondal of Bengaluru. His mother and her parents cook in people's houses for a living, and the cost of treatment is far beyond their means.
Little Amar has bright eyes and a lively smile - only enhanced by a milk moustache that he was wearing when we visited him. "About a year ago, we thought why is his hand bending like this?" said his mother Mousmi Mondal, holding him close.
That was when the family got devastating news. Amar, they were told, suffers from Hunter's Syndrome, which gets worse with age. The symptoms, generally not apparent at birth, include breathing trouble, enlarged liver and spleen, and a distended abdomen.
The cheapest treatment for Amar will cost a minimum of Rs 17 Lakh. "The doctors said the medicine is so expensive that you cannot afford it. Where can we get so much money? How can we arrange it? They say medicines will need to be imported" says Ms Mondol, who makes Rs 10,000 per month.
Amar went to school for a year. He can read and write, but the family does not want to pressure him. "I am trying to keep him alive. I love him so much. I want him to live," Amar's grandmother Aparna Das told NDTV.
Amar's father went back to West Bengal and does not send any money to the family.
Doctors say that there are two options for Amar's treatment - bone marrow transplant, which is more complicated, and enzyme replacement therapy.
"Bone marrow is possible only if there is a sibling, otherwise it will need to be matched with the child's parents. That would, at the very least cost us Rs 17 lakhs," said Amar's maternal grandfather, Montu Das.
The other more expensive treatment is enzyme replacement therapy which requires medicines to be imported at roughly Rs 35 Lakh a year.
For now, the family lives on hope.