Three-year-old Progeria patient gets a new lease on life at Noida’s Post Graduate Institute of Child Health

A three-year-old boy suffering from the rare Hutchinson-Gilford or progeria syndrome got a new lease on life at the Post Graduate Institute of Child Health, Noida.

The child received treatment at the newly created Department of Medical Genetics at PGICH under the care of Dr Mayank Nilay.

Upon diagnosis, Dr Nilay found that the child was suffering from the LMNA gene associated with Progeria.

Costly genetic tests and unavailability of the medicine to treat the disease in India acted as constraints.

Notably, this is the same disease Amitabh Bachchan was shown suffering from in the 2009 movie ‘Paa’.

According to the Mayo Clinic, Progeria is a progressive genetic disorder that causes children to age rapidly, starting in their first two years of life.

Those suffering from this disease rarely survive after the age of 15.

Keeping the seriousness of the disease in mind, Dr Nilay contacted Dr. Leslie Gordon (USA) who is known for her research for Progeria and with the active involvement of the parents, sent the blood sample to USA (free of cost) and got the genetic test done.

He also applied for free delivery of the medicine used in the treatment of this rare condition.
The medicine Lonafarnib was approved by the US FDA in November 2020 for the treatment of this condition. This is an oral medication administered twice daily.

It should also be noted Dr Gordon whose own child suffers from this disease is the brain behind Lonafarnib.

She also provides this medicine to kids across the world for free.

Progeria in India

This is a very rare disease with around 10 reported cases from India and many unreported children who die without any diagnosis or treatment.

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