14-Month-Old Baby with Life-Threatening Disease Gets Surgery
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Fourteen-month-old Fatima faced a bleak future afflicted with a killer muscular disorder, but a Rs 16 crore revolutionary gene therapy she underwent at a city hospital after winning a lottery has given her a new lease of life. Fatima from Bhatkal town in Karnataka, is recovering after she was given Zolgensma, the gene therapy at Bangalore Baptist Hospital late last month.

She emerged a lucky winner of a lottery through a compassionate access programme by drug major Novartis that helped her get the costly treatment, affordable only by multi-millionaires, the hospital said. "The cost of this medicine is about 2.1 million US dollars, which is roughly about Rs. 16 crore," hospital Director (CEO) Naveen Thomas said.

There is gradual improvement. She is now able to move her leg. It will take time to become like a normal child," her father told. The toddler was diagnosed with Spinal Muscular Atrophy or SMA, a disease caused by loss of nerve cells, which carry electrical signals from the brain to the muscles.

Current treatment options range from medicines, which increase these proteins to replacing the faulty gene. Zolgensma, gene therapy is a revolutionary treatment, which aims at curing the disease by replacing the faulty gene. In Fatima's case, it is a dream come true for doctors in this field. We hope more children receive this treatment and many such treatments will become affordable in the future, said Thomas.

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