COIMBATORE: A Namakkal-based businessman has petitioned Health Minister Ma Subramanian on Friday seeking help to save his daughter who is suffering from Spinal Muscular Atrophy (SMA) type 1, a rare genetic disease.
In his petition, K Satheesh Kumar, a textile businessman at Komarapalayam, said that his daughter KS Mithra, who is one year and 11 months old, was diagnosed with SMA type-1 disorder in June.The cost for one-time gene therapy would be `16 crore and the drug has to be imported.Speaking to TNIE, Satheesh said that the minister has assured to take up the issue with Chief Minister MK Stalin.
"After noticing low physical presentations in Mithra, doctors sent her blood samples to a German lab through a Coimbatore hospital in May. The results arrived in June and they revealed that she is suffering from SMA1. We have tried registering her name with a Swiss drugmaker to avail of cost-free gene therapy but we were told that Mithra had crossed the age limit."
She must be administered gene therapy soon as she will turn two on July 6, he mentioned.
Recently, Satheesh began crowdfunding on an online platform to import the drug fand has collected Rs 9.3 crore. Explaining the amount need for the therapy, he said, "The drug costs Rs 16 crore and import duty and GST would come around Rs 6 crore. We have to raise `22 crore to go ahead with the gene therapy.”
"We are knocking on all doors to save our daughter," Satheesh grieved.