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.
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.
The other more expensive treatment is enzyme replacement therapy which requires medicines to be imported at roughly Rs 35 Lakh a year.
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