Rs 16 crore drug is hope for 14-month-old SMA patient in Telangana’s Bhadrachalam

Hyderabad: A gene therapy costing Rs 16 crore is the only shot of life for a 14-month-old baby girl with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic disease, in Telangana. Baby Ellen’s father Praveen, a resident of Bhadrachalam, works as a medical representative. He along with the toddler’s mother Stella has set up […]

Hyderabad: A gene therapy costing Rs 16 crore is the only shot of life for a 14-month-old baby girl with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic disease, in Telangana.

Baby Ellen’s father Praveen, a resident of Bhadrachalam, works as a medical representative. He along with the toddler’s mother Stella has set up a fundraiser on Milaap to raise the required amount for Zolgensma.

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A rare genetic disease that attacks the baby’s nerves and muscles make it extremely difficult for the child to carry out basic activities like sitting up, lifting head, swallowing milk, and even breathing.

Ellen’s crowdfunding campaign on Milaap has so far raised Rs.32,62,246, cumulatively contributed by over 2,500 donors. UAE-based Indo-Arabic singer Neha Pandey used her Instagram handle with more than 2.5 lakh followers to further amplify this cause.

In the video, the singer said, “Crowdfunding is the only hope for Ellen’s parents to raise an amount of INR 16 Crores and to save their only baby’s life.”

Urging her supporters to come forward and support the cause she added, “I wish we all come together to give Ellen an SMA-free life.”

The medicine, Zolgensma, made by Novartis is available only in the USA and European countries. The cost of the drug is around Rs 16 crore and importing the drug would increase the cost by another six crores because of the import duty and the GST.

SMA is currently the leading genetic cause of infant death worldwide, and it affects one in 10,000 babies. One can donate for Ellen’s treatment at https://milaap.org/fundraisers/support-ellen.

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