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10 year old suffering from Hunter's Syndrome that requires 1 crore a year treatment
One might wonder where is the help for the child who was diagnosed with the syndrome at merely 4 years of age, and till date has been struggling with it. But is the government listening or are they treating Arian chowdhury as a commodity - better to be disposed of?

NORMALLY PASSED down from mother to child due to a faulty X chromosome, Hunters syndrome is rare and an expensive disease with death as the inevitable conclusion. While most of us have heard of the rare condition for the first time, 10-year-old Arian Chowdhury, a Sibpur resident, is living with it. His parents, Sib Sankar Chowdhury and Debjani Chowdhury, are at their wits end, and don't know what to do - as treatment for the rare condition would cost them Rs. 1 crore a year for the rest of their lives, reported The Times of India. While Sib Shankar Chaowdhury is writing to each and everyone who can help him, Debjani is yet to come to terms with her son's condition and giving up on him is no option for them.

Hunter's syndrome is a genetic disease caused by mutation that leads to the deposition of biomolecules in cells. In simple words, due to the deficit of a particular enzyme, deposits of molecules happen in the cells, which in turn leads to stiffening of joints and organs - not allowing them to function properly.

One person out of 2,00,000 suffers from the syndrome and the longevity of life depends on the type of Hunter's a person has, reported The Times of India. As far as Arian is concerned, the doctors have given him another 7-8 years of life.

Born on February 2, 2002, Arian's condition was first detected when a local homeopathic doctor heard wheezing in his heart and thought of a cyst. While consulting subsequent cardilogists, it was revealed that one of Arian's valve is thicker than the other, and this diognosis made their parents visit specialists at the Rabindranath Tagore International Institute of Cardiac Science. After their third visit, paediatric surgeon Biswajit Bandyopdhyay referred him to Apurva Ghosh stating that the problem was not in his heart but somewhere else. It was Ghosh, who suspected the boy to be inflicted with the dreadful Hunter's syndrome, and referred him to Christian College In Vellore. After a 24-hour urine test, it was confirmed that Arian lacked iduramate-2-sulphatate (I2S) enzyme that caused the syndrome.

The mere diagnosis was not the end of the plight for the Chowdhurys as they learnt that treatment is available but was not within their modest earning. To have a way of lessening one's child suffering and not to have a means to get that, must be the hardest possible pain that the couple is enduring from 2006.

In our country where crores of rupees are siphoned off by politicians due to one scam or the other, life for the Chowdhurys is unfair. However, Sib Shankar Chouwdhury is fighting the battle till the end, and has asked for help from every corner. He has written to the drug manufacturer Shire US Manufacturing Inc., and to the state government but so far there has been no help.

Mamata Banerjee, who felicitated not long ago some very rich men with gold chains and medals and what nots, doesn't seem to have sympathy for a geniune case. Where is she and why isn't something being done for Arian, whose bones have become stiff and he is unable to move his fingers or toes? Not only that, the 10-year-old has facial deformity and an enlarged liver. The only way to slow his condition is by injecting the I2S enzyme but the matter rests on the huge amount of money involed. Is Government treating Arian Chowdhury as a commodity better to be disposed off now or later?

Editorial NOTE: This article is categorized under Opinion Section. The views expressed in this article are solely those of the author and do not necessarily represent the views of merinews.com. In case you have a opposing view, please click here to share the same in the comments section.
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Vibhav Kant Upadhyay
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