Novartis donates Rs 16 crore drug to 23 month old Spinal Muscular Atrophy Type 1 patient
According to Praveen, they had registered their daughter under Managed Access Programme of Novartis and they received the information that the company had selected her as the beneficiary.;
Hyderabad: A 23-month-old baby with Spinal Muscular Atrophy (SMA) Type 1, received a new lease of life with Swiss drugmaker Novartis coming forward to donate gene therapy costing Rs 16 crore.
Baby Ellen was administered Zolgensma gene therapy, called the world's costliest drug, at a private hospital in Hyderabad on August 6, her father Rayapudi Praveen said on Sunday.
The baby with a rare genetic disease is currently under medical observation.
Hailing from Bhadradri Kothagudem district of Telangana, Praveen and his wife Stella, were struggling to raise the huge money required for the only treatment option for their child.
According to Praveen, they had registered their daughter under Managed Access Programme of Novartis and they received the information that the company had selected her as the beneficiary.
SMA Type 1 is a rare genetic disease that attacks the baby's nerves and muscles and makes it extremely difficult for the child to carry out basic activities like sitting up, lifting head, swallowing milk, and even breathing.
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