Six of the eight children of Nazir and Tabassum suffer from rare neurological disease
A 42-year-old man in Agra has decided to write to President Pranab Mukherjee, pleading euthanasia or mercy killing for six of his eight children who suffer from a rare neurological disease called Canavan, wherein the growth of children is developmentally delayed and over time the patient suffers seizures and becomes paralysed.
"I am tired of taking care of my children. I'm a normal sweet shop owner, there's only so much I can do for them," says Nazir. "That is when I decided to write to the President of India, pleading euthanasia for my children."
Their mother Tabassum has lost hope and is scared for the future of her children. "My kids want a normal life. They want to be a part of festivities too but because of their condition, they can't." Her eldest son and youngest daughter have had a normal growth.
The guidelines laid down by the Supreme Court in 2011, which regulated passive euthanasia, allowed for withdrawal of life-prolonging medical treatment for the terminally ill patients.
While the demand of these parents doesn't fall into the 2011 guidelines, their story and helplessness brings out the reality of a section of our population which cannot afford adequate health services.
"If not euthanasia, I would request the President to give me financial assistance for the treatment of my children," said the distraught father.
Rajesh Srivastava, Additional District Magistrate of Agra, told NDTV, "CMO officials did visit the family. They are getting their Aadhar card and BPL card made and will soon give them the required help."