Eight-year-old Ishan Katkar, who was suffering from progeria — a rare, incurable condition that causes rapid ageing — passed away on April 10 following a brain stroke in Satara. The boy was among the 19 children who have been diagnosed with the disorder in India so far.
The disorder, popularised by 2009 Amitabh Bachchan-starrer film ‘Paa’, causes rapid ageing in children, several of whom die in their early teens due to heart attack or old age.
On Wednesday, Ishan was rushed to Nirmaya Hospital after he suffered a brain stroke. “There was nothing the doctors could do. They advised us to let him spend his remaining time without pain,” Abhijit Katkar, the boy’s father and a government schoolteacher in Satara, said. The eight-year-old passed away later that evening, he said.
“His dream to visit all Shivaji Maharaj forts could not be fulfilled. We could only visit two before the first stroke paralysed him last year,” Abhijit said.
In 2012, Ishan was diagnosed with Hutchinson-Gilford Progeria Syndrome and the next year he was enrolled for the first-ever Lonafarnib drug trial for progeria-affected children in USA that seeks to extend age of mortality. The trial, according to Progeria Research Foundation, points to an increase in life span by 1.5 years – most progeria-affected children die by the age of 14-17 years.
Ishan, however, had to drop out of the drug trial in 2015 after he faced multiple side-effects due to the high-temperature conditions in Satara.
Summers were the most dreaded, as it caused dehydration and weakness to the boy, Abhijit said. Last year, the family had managed to replace the only cooler in their tin-roofed brick house in Jarewadi village with an air-conditioner.
In June last year, Ishan suffered a brain stroke that had left the left side of his body paralysed. With a monthly income of Rs 50,000, the boy’s parents could not afford regular trips to Mumbai and hence he started undergoing treatment at Nirmaya Hospital.
With the disease incidence of one in four to eight million, paediatricians have limited knowledge of progeria treatment, especially in rural India. According to doctors, Ishan was treated more to control his paralysis, and was given aspirin injections to reduce the risk of stroke.
In October, Ishan suffered a second stroke that paralysed his right side. “He could not walk and dropped out of Class II in government school,” Ishan’s mother Rani said. She added that the boy suffered another stroke in January this year.
Last week, with temperatures soaring, his health further deteriorated. “He stopped eating around three to four days ago. His breathing became shallow,” Abhijit said.
In 2016, Thane-based Nihal Bitla, campaigner for progeria in India, had succumbed to progeria due to complications of dehydration and heat. Since then, his father Srinivas has been campaigning to raise awareness about the disorder. Until 2017, at least 246 children were globally diagnosed with the disorder.
In India, patients have been diagnosed in Maharashtra, Bihar, Delhi, Chhattisgarh, Rajasthan, Haryana and Madhya Pradesh. A few of them are undergoing the USA drug trial for two drugs under the Progeria Research Foundation.