Thiruvananthapuram, July 11 (BPNS)
A village in Kozhikode district of Kerala is coming together for collecting a massive amount of Rs 18 crore to treat 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 of America (USA) and a single dose of this medicine costs Rs 18 crore. This medicine Zolgensma is a gene therapy medicine and one dose of the medicine 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 BPNS that the child is having difficulties holding her head up and is having trouble 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 panchayath president P.P. Chandrashekharan as Chairman and K.P. Abdul Azeez as convenor.