Plea for Urgent Financial Aid for Girl with Rare Disease: Delhi HC seeks Centre's reply
New Delhi: The Delhi High Court on Monday sought the Centre’s response regarding a plea filed by the mother of a young girl suffering from Spinal Muscular Atrophy (SMA). The girl, who requires an expensive gene therapy Zolgensma, has requested the court’s intervention to expedite the process of securing financial assistance for her treatment.
In the petition filed through her mother, the girl has said she is suffering from Spinal Muscular Atrophy (SMA) Type 1, a rare genetic disease that causes muscle weakness and is the most severe form of SMA that requires a life-saving gene therapy called Zolgensma.
According to the PTI report, Justice Sanjeev Narula issued a notice to the Centre and asked its counsel to get instructions from the authorities concerned.
The petitioner's counsel said the gene therapy would cost around Rs 17.5 crore and since the girl comes from a middle-class family, she does not have the means to bear the exuberant cost of the treatment.
Also Read:Ensure funds for treatment of kids with rare diseases: Delhi HC directs Centre
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