Bareli (Uttar Pradesh): Saba Parveen, mother of a six-month-old Manha, who is suffering from an autoimmune disease, Spinal Muscular Atrophy Type-1 disease (SMA) has appealed to the Chief Minister of Uttar Pradesh and Prime Minister Narendra Modi for financial support as to afford the treatment for the disease, Zolgesma which costs 22 crores. Zolgensma is a single-dose intravenous injection gene therapy in which the defective SMN1 gene is replaced through an adenoviral vector, and is currently not available in India and is imported from the US.
As the doctors diagnosed Manha with SMA, even her father left them to feed for themselves.
Spinal Muscular Atrophy is a progressive neuromuscular disease caused due to a defect in the SMN1 gene. The affected children develop muscle weakness involving upper and lower limbs initially, but over time develop difficulties in breathing and swallowing. SMA affects one in 10,000 children on an average. There are nearly 800 children suffering from SMA in India.
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Children suffering from SMA often need a ventilator for breathing.
The gene responsible for spinal muscular atrophy disease disrupts the production of proteins necessary for the smooth functioning of the nervous system in the body, resulting in nervous system damage and the death of infants. When the disease becomes severe, children die before they turn two years old.
Bareilly District Officer Nitish Kumar has also put all his might to save the life of this girl and all the paperwork has been completed.
Meanwhile, BJP MP from Amla Dharmendra Kashyap has written to Chief Minister Yogi Adityanath requesting him to make efforts to save Manha
