New Delhi: Around 100 children from across the country suffering from rare genetic disorders yesterday participated in a silent march to appeal to Prime Minister Manmohan Singh to provide them with financial aid and better treatment facilities.
Children suffering from Lysosomal Storage Disorders (LSDs), a group of around 45 rare genetic disorders of which five are treatable, participated in the march at Jantar Mantar.
According to sufferers, due to lack of funds and government aid, even those children who can be treated, continue to suffer as their families are not able to bear
the cost. “I know my son can lead a better life, if not a normal one, provided he is treated on time,” said Raj Kumar Yadav, a farmer from Bihar, whose six-year-old son was diagnosed with LSD three
years ago. Some participants complained that delayed treatment made the disease incurable in their case and they don’t want this to happen to other patients in the nascent stage. “Due to ignorance, my family members did not consult a doctor before I was 16, and they noticed that my growth had stunted,” said Dharmendra.
“When I met the doctors at AIIMS here, they took around two years to conduct tests only to say that there is no treatment for my disease. I don’t want that to happen to my brother, who is also suffering from the same diseases which are in a nascent stage,” added Dharmendra.
Sib Shankar Chowdhury, secretary, Lysosomal Storage Disorder Support Society, said despite detection of the disease, these people are not getting timely treatment.