sree45
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Kolkata: In a small, one bedroom apartment on the outskirts of Kolkata, 35-year-old Debjani Chowdhury sits in front of a dusty computer trying to tweet. Her 12-year-old son Arian is lying on the bed, staring at the ceiling.
"If I knew I had to go through all this, talk to the media, learn how to use the computer to tweet and petition, I would have tried to be better educated, I feel so helpless," says Arian's mother Debjani as she breaks down.
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.
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.
His father Shib Shankar Chowdhury earning Rs 6,000 at that time didn't know where to turn. Nine doctors and one year later, he was finally diagnosed with one of the world's rarest diseases.
For nine years Debjani has been Arian's constant companion trying to face the disease and its consequences with the stoic force of her will and a strong heart.
She still remembers the afternoon when he was writhing with pain after a hernia attack and had to rush him to the nearest clinic with no one by her side.
"I am strong. I try to be strong but these days when I walk on the streets with my son, the children stare at him, I can't bear it. I can't bear the questions he asks me when we come back home," she says wiping away the tears with her sari.
A sharp boy with a quick wit, Arian is like any other 12-year-old. "I love Paglu dance by Dev," he says as his eyes light up talking about his favourite cine star from Bengal before picking up his drumsticks to play his his favorite tune.
His father bought his a drum set which he plays almost instinctively just like his drawing book with paintings of houses and starlit nights. "He asks me 'Baba when will you find my medicine'?" Shib Shankar says.
In 2006, the United States Food and Drug Administration approved the drugElaprase, 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.
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 connect.to.arian@gmail.com
Living with a rare, deadly Hunter syndrome: 12-year-old Arian's story - IBNLive
375,000 dollars for a year's treatment.
Don't these fukin Pharma companies have a limit to how much they can charge for a drug?
"If I knew I had to go through all this, talk to the media, learn how to use the computer to tweet and petition, I would have tried to be better educated, I feel so helpless," says Arian's mother Debjani as she breaks down.
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.
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.
His father Shib Shankar Chowdhury earning Rs 6,000 at that time didn't know where to turn. Nine doctors and one year later, he was finally diagnosed with one of the world's rarest diseases.
For nine years Debjani has been Arian's constant companion trying to face the disease and its consequences with the stoic force of her will and a strong heart.
She still remembers the afternoon when he was writhing with pain after a hernia attack and had to rush him to the nearest clinic with no one by her side.
"I am strong. I try to be strong but these days when I walk on the streets with my son, the children stare at him, I can't bear it. I can't bear the questions he asks me when we come back home," she says wiping away the tears with her sari.
A sharp boy with a quick wit, Arian is like any other 12-year-old. "I love Paglu dance by Dev," he says as his eyes light up talking about his favourite cine star from Bengal before picking up his drumsticks to play his his favorite tune.
His father bought his a drum set which he plays almost instinctively just like his drawing book with paintings of houses and starlit nights. "He asks me 'Baba when will you find my medicine'?" Shib Shankar says.
In 2006, the United States Food and Drug Administration approved the drugElaprase, 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.
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 connect.to.arian@gmail.com
Living with a rare, deadly Hunter syndrome: 12-year-old Arian's story - IBNLive
375,000 dollars for a year's treatment.
Don't these fukin Pharma companies have a limit to how much they can charge for a drug?
