After losing his son to the genetic disorder, this Mumbai man is on a mission to find undetected cases and help them secure treatment
The legacy of Nihal Bitla, who became the face of progeria and passed away at age 15 last year, is being taken forward by his father Shrinivas. Efforts to identify children with progeria have been escalated with a campaign – finding60inIndia - headed by him. So far, eight more children suffering from the rare genetic disorder have been found, the latest being a case of twins from Haryana and a boy in Delhi.
Progeria or Hutchinson-Gilford progeria syndrome causes accelerated aging in children, leading to premature death. It has no cure, and has an incidence of one in four million. As per estimates by US researchers, India may have upto children suffering from progeria while their condition remains undetected, says Shrinivas. Worldwide about 134 children have been identified to be suffering from Progeria.
The 39-year-old who runs a mobile repairing shop mobilised his network to find new cases that include a boy in Satara, Maharashtra, a girl from Bihar, and another in Chennai, and two boys from Madhya Pradesh over the last two and a half years.
Shrinivas and his friends, who had come together to form Team Nihal, run awareness campaigns in local newspapers, TV channels, and at events to identify and inform them of cases of progeria in their localities, he says.
"Once we find a case, we convince the families to enrol in the progeria clinical trial by the Progeria Research Foundation in Boston. Some families are illiterate or lack and need hand-holding to make the treatment happen. We help them to acquire passports and visas, and secure funds for the trip," Shrinivas says.
His son Nihal was also part of the clinical trial on lonafarnib, an anti-cancer drug. While it is not a cure, the drug has shown to help increase their lifespan to a degree.
"We are pushing hard for other children who suffer from the condition to get a chance at longer, fruitful lives. The government is not doing as much as it should to help. Diseases which have larger prevalence take up government's resources and time. It is for this reason that we have come together to help children with progeria," he says.
SUPPORT ADITYA
Close to Shrinivas' heart is the case of seven-year-old Aditya Sahu from Chhattisgarh.
Shrinivas is running a crowd-funding campaign, 'Be An #AngelForProgeria' to raise money for the boy's treatment. Aditya, who wishes to meet actor Amitabh Bachchan some day, is on growth hormone injections, anti-cholesterol and anti-hypertensive drugs and lonafarnib. While Raipur AIIMS provides the hormone injections that cost Rs18,000 a month, the Sahu family need an additional Rs 3,000 for other medications.
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