New Delhi: Great news for 12-year-old boy Arian that US pharmaceutical company that manufactures the expensive drug used to treat the disorder has agreed to provide Arian’s family with the medicine for the rest of his life.
Arian is suffering from the rare genetic disorder called Hunter’s syndrome. A single dose of the drug which Arian takes once a week, costs Rs 7 to 8 lakh.
The parents of Arian had also appealed for help from the government to make this treatment available in India and to subsidise it.
Hunter syndrome is a rare genetic disorder caused by the lack of a crucial enzyme in the body. It first affects the limbs and then slowly spreads to the brain till it proves fatal. It is a reality that’s been haunting Arian’s parents for the past 9 years.
Desperate to save their son’s life, Arian’s parents started an online petition at Change.org. The campaign went viral with a retweet by actor Shah Rukh Khan. Health Minister Harsh Vardhan, who had been petitioned to subsidise the drug, promised all help.
You can donate for Arian through either cheque or online banking funds transfers (NEFT, RTGS, and so on). His parents have opened an account in his name specifically for this purpose.
Bank A/c Details:
Account Number – 0172010368001
Account Name – Arian Chowdhury
Bank Name – United Bank of India
Branch Name – Shibpur, Howrah
IFSC Code – UTBI0SHB126
Bureau Report
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