Arian needs your help!

September 13, 2013 at 11:47 am 1 comment

Mucopolysaccharidoses II… don’t know the meaning of this word and finding it hard to pronounce? Imagine the plight of 11 year old Arian Chowdhury who is suffering from this extremely rare genetic disorder also called the Hunter’s Syndrome. Fortunately, treatment is unavailable; unfortunately it’s beyond his parents to afford it.

Hunter’s Syndrome is caused by mutation that leads to deposition of biomolecules in cells and as cells get progressively clogged, organs begin to fail, causing death. There around 2000 people reportedly afflicted with Hunter Syndrome in different part of the world of these approximately 500 are in the United States, 30 in Canada, 2 in New Zealand, few in various countries and  Arian here in India. It is an awfully painful and life threatening condition for which the only available treatment is Enzyme Replacement Therapy.

While this therapy can prove to be highly beneficial for Hunter Syndrome patients it is extremely expensive and one of the costliest drugs ever developed. This medicine is the only hope for Arian now. Developed by Shire Human Genetic Therapies Ltd, the drug is not yet available in India however with prior permission from Drug Controller General of India it can be imported as it is a life-saving drug.

The cost of the drug is the only factor that has not yet made it possible for Arian to receive the treatment as a weekly dose costs over 2 lakhs. Considering that the therapy is to be administered on a regular and on a long term basis, the expense is estimated to run into several lakhs, probably close to a Crore annually.

 Arian is not seeking financial aid, only a minute of your time to sign-up & support his plea addressed to the Union Health Minster of India.

To join  his fight for survival and right to quality life and treatment, click & register http://change.org/arian

Arian

Want to take this beyond signing-up the plea?  Please contact his father Sib Sankar Chowdhury @ +91 9831361116. You can also drop in a line to me in case you need more details about his medical history and case details

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Entry filed under: COL- Circle of Life!, Me & Media. Tags: , , , , , , .

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