The parents of Arian Chowdhury, a Howrah-based boy and the only child of his parents who is suffering from an almost incurable disease called Hunter Syndrome (medically known as Mucopolysaccharidosis type II) have written to the health minister asking for medical support. This is a rare genetic disorder and only about 2000 people worldwide have this disease that slowly affects the whole body and life expectancy is drastically reduced.
Chowdhury was 4 when diagnosed with Hunter Syndrome and is 11 years old today. His parents have been struggling for 7 years to find treatment for him.
The treatment for this disease is called Enzyme Replacement Therapy which will be given as Intravenous injection and needs the drug Elaprase which is available with only 1 company worldwide - Shire HGT, an American company.
"Arian's parents are a middle class family and it is impossible for them to afford the treatment for their son’s disorder as it is prohibitively expensive. Approximately 80 lakhs -1 crore is the estimated annual expenses for his treatment," says Mamta D, a wellwisher.
"The boy's condition is deteriorating each day and his life expectancy is reducing. If he gets the treatment, the progression of the disease can be halted," she adds.