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Children with disorders appeal to PM for help
Thursday February 28, 2013 10:07:27 AM,
IANS
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New Delhi:
Around 100 children from across the country suffering from rare
genetic disorders Wednesday 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 whose disease can be treated, continue to
suffer as their families are not able to bear the cost of the
treatment.
"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 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 but is in nascent stage," added
Dharmendra.
Sib Shankar Chowdhury, secretary, Lysosomal Storage Disorder
Support Society, an NGO that works towards the betterment of such
children, said despite detection of the disease, these people are
not getting timely treatment.
"These families are now at crossroads. Even after the detection of
the disease, they are unable to do anything. In fact, due to lack
of timely treatment, a few children have even succumbed to death.
Only government support can save them now," he said.
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