Patna: After being discouraged against seeking mercy killing for his two sons, Mukesh Kumar now seeks Prime Minister Manmohan Singh and Bihar Chief Minister Nitish Kumar`s help to save the teenagers, who suffer from muscular dystrophy.
The rare muscular disorder is characterised by the death of muscle cells and tissue, reducing the victims` body to a mere skeletal form, with curved spines, progressive loss of body muscle and respiratory difficulties.
"We were told that permission for mercy killing is impossible. If it is so, than the prime minister and chief minister should provide financial help for their medical treatment," Mukesh Kumar told a news agency over telephone on Friday.
Nitin, 15, and Anshu, 13, cannot talk or stand on their feet. They are also paralysed below their chest and are unable to eat or move without assistance.
Their mother, Asha Devi, says her sons were born healthy, but gradually started developing the condition when they were about two years old.
Mukesh says doctors and government officials have suggested that they demand free medical treatment at Delhi`s All India Institute of Medical Sciences (AIIMS).
Mukesh and Asha were informed that the Supreme Court rejected the mercy killing petition for Aruna Shanbaug, a nurse who has been in coma for 37 years in Mumbai.
Some doctors have told them that there is no cure for muscular dystrophy, while some have told to try their luck at AIIMS.
Others have made it clear that advances have been made, but the treatment is available only in the US, and costs anywhere upwards of Rs 30 lakh (Rs 3 million/about USD 60,000).
Mukesh Kumar speaks of this sum with an expression of helplessness. He also runs a small shop to supplement his income, but manages to earn just Rs 3,500-4,000 a month.
A poor farmer in Ratwada village of Muzaffarpur district, some 70 km from Patna, he has sold off his little piece of land and other valuables for his sons` medicines.
"We cannot see our sons` pain and helplessness any more. Both are in utter discomfort," he said with a void in his eyes.
"There is no temple or mosque 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.
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.