Kolkata: A 16-month-old child, who was suffering from a rare genetic disorder, is on path to recovery after he got a life-saving injection worth Rs 18 crore at a private hospital in Kolkata.
The child, who hails from West Bengal's East Medinipur district, was given free gene therapy treatment here. He is currently under observation of the medical team and doctors said his condition is improving.
According to hospital sources, the family noticed peculiar problems in the child when he was six months old. For instance, unlike other children of his age, he faced difficulty in moving his legs and arms. The family had first taken him to a local pediatrician, who diagnosed a genetic disease and referred him to Kolkata.
After various tests, the doctors confirmed that he was suffering from Spinal Muscular Atrophy (SMA), a disorder affecting the motor neurons that control voluntary muscle movement.
Doctors said SMA occurs when two copies of the SMN1 gene (one from mother and one from father) are defective. SMA is usually fatal if left untreated but the treatment is extremely costly.
The treatment requires Zolgensma, an injection that costs Rs 17.5 crore. This therapy has been done in India before through Novartis' Global Managed Access Programme but it was stopped after July 31. This child from East Medinipur is the last patient to undergo free therapy of this genetic disorder.
The child's mother said, "I followed the rules and regulations for several months to avail this gene therapy for my son. The hospital authorities helped us and now my child is under doctor's observation."
According to the child's doctor, Anakshta Dey, "So far, three children in eastern India have received therapy for SMA. The best time to undergo this therapy is when the patient is below two years. There are three more such children who need therapy and we are trying to adopt alternative measures for them."
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