14-month-old baby in Telangana with rare genetic disease needs Rs 16 crore injection to survive

Baby Ellen was diagnosed with rare genetic diseases that can only be cured using Zolgensma, an expensive drug.

Ellen, a 14-month-old baby from Bhadrachalam town in Telangana needs the 'world’s most expensive drug' worth Rs 16 crore to survive. Ellen was diagnosed with a rare Spinal Muscular Atrophy (SMA) and the injection is required as part of gene therapy treatment.

SMA type 1 is a rare disease that affects 1 in 10,000 babies worldwide. This deadly disease, if not treated immediately, can prove to be life threatening.

Zolgensma, labelled as the 'world's costliest drug', gene therapy is the only treatment option available. Baby Ellen’s father, Praveen who works as a medical representative launched a crowdfunding initiative to fund Ellen's treatment.

Praveen, along with his wife Stella started a fundraiser on Milaap to raise the required amount for Zolgensma. This fundraiser has been supported by over 2,600 donors from across the world.

UAE-based Indo-Arabic singer, Neha Pandey, shared a video on her Instagram handle seeking support from her followers for a 14-month-old baby’s SMA treatment. In the video, Neha Pandey 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.”