Nimesh Khakhariya| TNN |

Diamond polisher Dinesh Maisurya with his son Parth and wife in Savarkundla town of Amreli districtDiamond polisher Dinesh Maisurya with his son Parth and wife in Savarkundla town of Amreli district

RAJKOT: This couple from Savarkundla town in Amreli had their sole happy moment when Prime Minister Narendra Modi arranged for free medical treatment for their ailing 12-year-old son. Modi responded to their letter seeking help for their son’s debilitating neurological disease.

But one year on, diamond polisher Dinesh Maisurya has again written to the PM. This time, seeking euthanasia permission for his son Parth. It’s a daily pain for the parents to see their son getting seizures every 10 minutes and gradually moving towards severe disability.

Parth suffers from subacute sclerosing panencephalitis (SSPE), a rare neurological disorder, which causes spasms or jerks and the patient loses control over the movement. This viral disease often resents in dementia or personality alterations and the patient’s behaviour turns abnormal and erratic.

“Nothing can be more painful for parents to see their child dying a slow death every day. It’s unbearable to see his condition and it is two years now,” said Maisurya, who has written to the PM seeking euthanasia nod.

After PM’s intervention, Parth was taken to All India Institute of Medical Sciences(AIIMS) in New Delhi for treatment. But there was no improvement. He is now under treatment of Ahmedabad Civil Hospital‘s doctors, who are treating the child as per the instructions of AIIMS doctors. But doctors said SSPE is incurable.

After doctors told him that SSPE is incurable, Maisurya wanted to “dedicate” his son for medical experiments. “I don’t want other children of the same disease to meet the same fate. I want to dedicate my child for doctors’ research so that they can develop medicine for SSP.

“If that’s not possible, I seek euthanasia for him,” he wrote in the letter. However, laws don’t permit experimenting on living human beings.

As the disease progresses towards stage 2, the intensity of the spasms and the mental deterioration increases. The spasms can affect ability to walk, speech impairment, inability to comprehend and difficulty in swallowing.

“Parth is surviving on liquids only. He can’t have food, he can’t walk and suffers seizures 8 to 10 times in a minute which continues the whole day. This is his condition for the last 15 months. We can’t see his suffering any more,” said Maisurya, who has spent all his hard-earned money on the treatment.