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Two Kids Battling Rare Disease Need Rs 16 crore for Injections in Chhattisgarh

Representative Image. (Reuters)

Representative Image. (Reuters)

The injection for curing the disease through gene therapy is imported from abroad and a Rs 6 crore import duty is levied on the same.

Fourteen months old Shristi was like any other normal kid after her birth but her physical movements ceased when she turned four to five months and when the family contacted the physicians in Vellore Tamil Nadu, they were stunned to know that their daughter suffers from a rare disease –Spinal Muscular Atrophy Type I.

The surprise turned into a nightmare when they were told that the little girl needs a Rs 16 crore injection for getting cured of the ailment.

The rare disease which renders kids unable to use their muscles for physical movements is a degenerative disease which means by the time the muscular weakness grows and the kid also faces problems in breathing, doctors taking care of the girl in Chhattisgarh said.

The kid from Bilaspur is now on breathing support system.

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The injection for curing the disease through gene therapy is imported from abroad and a Rs 6 crore import duty is levied on the same.

However, for Satish Kumar, father of Shrishti, who is employed with South Eastern Coal Fields Limited in Korba, polling such an astronomical amount is beyond imagination.

“I have no means to compile so much money so I urge public, state government and Centre to help me out to save my daughter,” Satish told News18.

Two-year-old Ayansh from Durg in Chhattisgarh also suffers from the same disease. His father Yogesh Gupta is keenly following updates from a crowdfunding portal for polling in the gigantic amount of Rs 16 crore for treating his son.

Through a campaign, Ayansh Fights SMA, we are trying to poll in Rs 16 crore to get our treated with the help from the public, said Gupta. The parents have managed to collect Rs 1.20 crore through crowdfunding till now.

Unaware of a massive fight he is up against, Aynash plays with the help of his parents and also sings but the disease has restricted his daily activities.

first published:February 17, 2021, 13:07 IST