RAIPUR: In February, the Union government had waived off Rs 6.5 crore in import duty and GST on a medicine for the treatment of six-month-old Baby Tira Kamat of Mumbai.
In Chhattisgarh, 23-month-old Baby Srishti Rani is suffering from the same rare genetic disease, Spinal Muscular Atrophy. For her, a similar generous help has come from the South Eastern Coalfields Limited (SECL).
In a noble gesture, SECL has decided to bear the entire cost of the highly expensive medicine that has to be imported for the treatment.
“The SECL on Thursday sent a demand draft of Rs 16 crore, the cost of the injection Zolgensma, to AIIMS-Delhi after an approval given by the chairman of Coal India Limited (CIL). The injection and supporting medicines are to be imported from the US,” said Sanish Chandra, SECL spokesperson.
The baby’s father, Satish Kumar Ravi, works as a miner with SECL, the largest coal-producing subsidiary of CIL, in Korba district.
“My daughter was diagnosed with SMA at the Christian Medical College Vellore in December 2020. She is currently on portable ventilator at home in Korba,” he said.
Srishti was barely 13-month-old when she has to be put on a ventilator at Apollo hospital in Bilaspur in February.
She was later shifted to AIIMS-Delhi. With no effective recovery seen, the family had returned home.
The doctors prescribed her antibiotics to prevent any infection as she remains on a feeding tube and ventilator.
SMA is a motor neuron disease that results in a person not having any control over the movement of their muscles due because of the lack of nerve cells, in their spinal cord and/or brain stem.
Ravi said despite all the support his family got so far, he could see light at the end of the tunnel only after CIL’s generous move.