Thiruvananthapuram, July 11 A village in Kozhikode district of Kerala has come together to collect Rs 18 crore to treat a 9-month-old Siya Fathima who is suffering from Spinal Muscular Atrophy (SMA).
Medicine for this rare disease has to be imported from the United States and a single dose costs Rs 18 crore. Zolgensma is a gene therapy medicine and a single dose will cure the disease.
Siya, the daughter of Siyad and Fazeela of Chorode started showing difficulties in moving, three months after she was born. The toddler was taken to the Malabar Institute of Medical Sciences (MIMS) where doctors diagnosed her as suffering from Spinal Muscular Atrophy (SMA). Subsequent tests at Bengaluru and Thiruvananthapuram confirmed that the infant was suffering from Type 1 SMA.
Siyad, the father of Siya, told that the child is having difficulties holding her head up and is having trouble in eating and breastfeeding also.
People of Chorode village in Kozhikode district conducted a massive convention at Athafy auditorium in Chorode on Monday for taking forward the collection initiative.
A committee for fund collection is formed with Chorode gram panchayat president P.P. Chandrashekharan as Chairman and K.P. Abdul Azeez as convener.
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