Hyderabad: Six-month-old Shaik Mohammad Zayaan from Telangana’s Narasaraopet is battling Spinal Muscular Atrophy (SMA-type 1), a rare genetic disorder that affects the motor neurons in the spinal cord and results in progressive muscle weakness and atrophy.
Due to his condition, the baby is unable to swallow without assistance and is at constant risk of choking.
Additionally, he has severely limited mobility, requiring his parents to monitor him closely at all times. The infant’s condition was identified at 10 weeks of age after the doctors conducted a series of tests.
The treatment for SMA-type 1, a one-time gene therapy injection called ZOLGENSMA costing Rs 16 crores, is financially out of reach for the family.
ZOLGENSMA (onasemnogene abeparvovec-xioi) is a gene therapy designed to treat spinal muscular atrophy (SMA) in children under two years old. It is the first one-time gene therapy approved by the FDA for this condition.
“The drug is not manufactured in India and has to be imported,” said Dr Ramesh Konanki, who is treating the Mohammad Zayaan in a hospital in Hyderabad.
The family raised Rs 5 lakhs until now through individual efforts. Mohammad Zayaan’s father, Yaseen, an IT employee is running an online fundraiser programme to save their child from the rare disease.
