V. Rajendran and Sujatha have a six-year-old boy, Raghu, who has been diagnosed with LSD (Lysosomal Storage Disorder) and requires medicines costing Rs. 98,000 per dose. He needs two doses every month. Raghus older sister does not share his genetic problem or understand the seriousness of the situation as she plays with her brother. We realised his growth was abnormal when he was 18 months old, Mr. Rajendran said. Diagnosis of the disease was the easier part. If the dose is not administered on time, he suffers from swelling of liver and spleen, he said. Like Raghu, there are 150 children in the State and while some of them need expensive medicines to manage their condition, others need correctional surgeries. LSD is a group of 45 different genetic diseases, caused by lack of secretion of certain enzymes in the body. K. Divya (16), a class XI student, looks like a two-year-old. There are no medicines to treat her, however. Her appearance on a television show helped her get admission in school, said her father J. Karunakaran, who also spearheaded a movement called the LSD Support Society to bring together such children and their parents. Divya scored 92 per cent in … Continue reading
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