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. Raghu’s 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 the class X board exams.
Worldwide, there are around 10,000 children who can live a near normal life if medicine is made available to them, said geneticist Sujatha Jagadeesh of MediScan, a Chennai-based centre which deals with identification and diagnosis of genetic diseases.
“Elsewhere, medicines are provided free of cost. We could at least ensure medicines are provided for those conditions that can be managed with drugs,” she said.
“There are some laboratories that conduct the basic tests but confirmatory diagnosis is done by sending urine and blood samples to Taiwan. A family requiring such tests must pay Rs. 20,000.”
Chief medical director of MediScan S. Suresh said there are medicines for six of the diseases under the LSD umbrella but none of the children can afford it.
“The government could set up a diagnostic laboratory. The government could provide these children a rare card disease which would help them access public transport free of cost and prevent them from having to wait in long queues in hospital for medical attention,” he said.
A trust set up by MediScan has distributed Rs. 1 crore worth of medicines and equipment to children suffering from LSD. The children and their parents gathered in the city on Wednesday to send an appeal to the Chief Minister. Their signed appeal will be forwarded to J. Jayalalithaa, Dr. Suresh said.