He was one of the 5 known children with the ageing disorder in India * Worldwide, it occurs 1 in every 4 million births
Nihal Bitla (15), Mumbai's only child with progeria, passed away at his home town in Telangana late on Monday evening. The Bhiwandi resident was attending a family wedding when he suffered brain stroke and was admitted to a hospital in Karim Nagar.
It was a gene test at the Parel-based National Institute for Research in Reproductive Health by Dr Parag Tamhankar which confirmed that Nihal had Hutchinson Gilford Progeria - a genetic disorder that accelerates ageing-- when he was 10 years old.
He is one of the 60 children in India who has been diagnosed with progeria. Nihal was treated at the Children's Hospital in Boston, US, to receive the only known treatment for progeria.
A team of doctors, including Dr Leslie Gordon, co-founder and medical director at Progeria Research Foundation (PRF), first identified the drug – lonafarnib – that could improve the cardiovascular health and lifespan of these children.
"I met him two weeks back on a Progeria Day event. He was helping us with the awareness programme. When I thanked him, he said, 'In friendship, no thank you and no sorry!'" said Dinesh Chindarkar, co-founder and director of Media Medic Communication, which is handling PRF's communication in India.
He added that Nihal was witty and full of life. "He was hail and hearty when we met last. He was a gadget freak and encyclopedia of robotics and automobiles," said Chindarkar.
With the help of Dr Thamankar, Nihal was sent to this foundation where he spent a month and received treatment and his movements became more flexible.
Nihal had to stop his schooling when he was in class IV because of deteriorating health. In an interview to dna in August 2015, Nihal had said he wanted to be a painter.
Most kids with progeria do not live past the age of 13. The disease affects both sexes and all races equally. It affects about 1 in every 4 million births worldwide. PRF has been undertaking a national donation campaign on April 15 – Progeria Day – for the last four years.
Chindarkar said that Nihal was the face of progeria in India and was actively promoting awareness programme on the disease, along with PRF, which is on a mission to find others in India who suffer from the disease.
According to the foundation, there are an estimated 300-350 children worldwide with the disorder. Of these, 60 children are believed to be from India. Right now, only 125 cases are known. PRF has launched a campaign to find out the others and treat them.
"Currently, there is no proper treatment available across the world. This is the only foundation that is working on drugs for the disease. Of the estimated 60 children in India with the disease, we know only five. One was Nihal. He was the eldest. The other four are from Bihar," said Chindarkar.
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