(Bihar): 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
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
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
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,"
"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.
(Imran Khan can
be contacted at firstname.lastname@example.org)