Infant with rare disease administered costly imported medicine

Teera Kamat, a six-month-old suffering from a rare disease, on Friday was administered a medicine whose cost is estimated to be Rs 16 crore and for which the Centre had waived off import duty and GST, officials said.

The child suffers from Spinal Muscular Atrophy, also known as SMA Type-1, a rare condition in which a complete breakdown of nerve cells in her brain and spinal cord result in zero control over muscle movement.

The infant was given the imported Zolgensma medicine in Hinduja Hospital and is likely to be discharged on Saturday, they said.

Zolgensma will help replace the missing or non-working motor neuron with a new one, they added.

Her parents, Priyanka and Mihir Kamat, had made fund raising appeals on social media and had also appealed to the government for relief on import duty and GST.