CHENNAI: Parents of four-year-old Kaviyan Senthil, who is suffering from a rare genetic metabolic disease, heaved a sigh of relief after the State government recommended an expensive enzyme replacement therapy for the child, free of cost.
The Lysosomal Storage Disorders Support Society, India (LSDSS), in May 2014, filed an application with the government of Tamil Nadu demanding free treatment to patients in the state suffering from Gaucher, Pompe and Mucopolysaccharidoses (MPS), all genetic metabolic disorders.
Following this, the government directed the Institute of Child Health, Egmore to provide the treatment.
The Institute then constituted a medical board that recommended treatment- Enzyme Replacement Therapy to Kaviyan Senthil, who is suffering from MPS-I (Hurler Syndrome).
MPS-I is a very rare genetic metabolic disease caused by an inborn enzyme deficiency which leads to significant enlargement of the heart, weakness of heart muscles, respiratory distress, breathing complications and growth retardation.
Manjit Singh, president of Lysosomal Storage Disorders Support Society, India (LSDSS) said that there are 598 LSD affected children from across India with the society, of which 182 are from Tamil Nadu. 30 children had died due to non availability of treatment last year, added Manjit Singh.