MUZAFFARPUR, Inda -- Asha Devi is aware of the cruel irony. "Mothers seek long lives for their children, but here I am seeking death for my two sons," she says, slumped beside Nitin, 15, and Anshu, 13, who suffer from muscular dystrophy.
The rare muscular disorder is characterised by the death of muscle cells and tissue, and reduces its victims to skeleton-like shapes, with curved spines, progressive loss of body muscle and respiratory difficulties.
Nitin and Anshu cannot talk or stand on their feet. They are also paralysed below their chests and are unable to eat or move without assistance.
Asha says her sons were born healthy, but gradually started developing the condition when they were about two years old.
There is no cure for muscular dystrophy. Some advances have been made, but treatment is available only in the US, and costs anywhere upwards of Rs. 30 lakh (Rs. 3 million/about 60,000 USD).
The boys' father, Mukesh Kumar, speaks of this sum with an expression of helplessness.
A poor farmer in Ratwada village of Muzaffarpur district, some 70 km from Bihar capital Patna, he also runs a small shop to supplement his income, and manages to earn Rs.3,500-4,000 a month.
The sum is simply beyond his reach. That's why, he said, "I have asked the state government to grant permission for my boys' mercy killing".
The plea comes at a time when the Aruna Shanbaug case is in the spotlight, with the Supreme Court rejecting mercy killing but giving support to the possibility of passive euthanasia for the nurse who has been in coma for 37 years.
"We have been pleading for their mercy killing because we cannot continue costly medical treatment, which anyway will not cure them, only prolong their unhappy lives. The state government should either grant permission or provide us help for treatment," he said.
"We cannot see our sons' pain and helplessness any more. Both are in utter discomfort," he said.
For Asha Devi, her children's condition is too much to bear.
"I cannot tolerate such a painful life for them. It is for the government to decide whether to grant permission for mercy killing or help us with their treatment," she said, her voice choking.
Mukesh said he sold off his little piece of land and the meagre valuables he had for his sons' medicines.
"There is no temple or mosque here that I haven't visited to pray for my children. I've gone to Delhi, Lucknow and Kolkata for their treatment, and tried everything from allopathy to ayurveda. I've done everything I could," he said.
"We are completely destitute now, struggling for survival. How can we manage money for their treatment?"
Meanwhile, Tirhut range Divisional Commissioner S.M. Raju has assured all help to the couple. "After I was informed about them, I invited them to meet me. I will ensure every possible help to them," he said.
Asha said last year they tried to meet Chief Minister Nitish Kumar at his popular 'janta darbar' in Patna but were not allowed inside by security officers.
"I see their distress every day. Either they should be provided proper medical treatment or they should die," the mother said.
Friday, March 11, 2011
Posted by BA Haller at 2:07 PM