New Delhi: Help is pouring in for 12-year-old Arian who is suffering from a rare genetic disorder. After CNN-IBN launched an intuitive in partnership with Change.org, 133 people have offered to help Arian so far. More than Rs 5 lakh have come in the form of donations from people across the country.
People from Italy, Switzerland and Germany have called Arian's father offering to help him. Thanking people for their support, Arian's father Shib Shankar Chowdhury said that the injections that are given to him every week cost Rs 3 lakh which brings the cost of the annual treatment to nearly Rs 1.5 crore.
He also appealed to the government to take responsibility for the treatment of his son. "We want the government to take responsibility. Health Minister Harshvardhan himself is a doctor so he should take action on my son's case and on other such cases," he said adding that the drug that is to be given to Arian every week is not available in India. He requested the government to make it available and also to subsidise it.
Arian is suffering from a rare metabolic disorder Hunter Syndrome, where each day, every cell of his body is slowly disintegrating for the lack of a crucial enzyme. "This is a life long treatment. There is a deficiency of an enzyme in his body which has to be injected into the cells," Arian's father said.
The first symptoms appeared when Arian was three years old and had difficulty carrying his school bag. One day his teachers told Debjani that he couldn't lift his hand during a school exercise. Arian soon started losing his motor abilities and his face started showing symptoms of the disease. Nine doctors and one year later, he was finally diagnosed with one of the world's rarest diseases.
In 2006, the United States Food and Drug Administration approved the drug Elaprase, an enzyme replacement treatment that can save patients suffering from this debilitating disease. It is a drug which can save Arian's life but is beyond the reach of his parents.
But Elaprase is also known to be one of the most expensive drugs in the world which costs $375,000 per year. The symptoms of Hunter Syndrome are progressive which according to doctors can even affect the brain and prove fatal.
Arian's body has weathered the disease for 12 years where his limbs are increasingly getting more deformed and his growth is stunted. It's a race against time to save their only son.
His mother Debjani and her husband took to twitter with @SAVE_Arian a year ago to petition to the world to find a way to save him each day, with each tweet. Inspite of sporadic donations the family thinks there must be a long term solution to Arian's plight. They started an online petition at Change.org seeking the intervention of Union Health Minister Harsh Vardhan to subsidise the treatment of the disease.
Arian has become the face of a campaign to help children like him who are suffering from this disease but are unable to get treatment.
Sign the petition here. You can also follow their twitter handle @Save_Arian
Donate For Arian
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
For international wire transfers, in currencies other than Indian, please use the following SWIFT code:
UTBIINBBPKS
If you'd like to write in, you can do so at [email protected]
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