BENGALURU: Revathi, 11, suffers from Gaucher’s disease, a rare genetic disorder, for which she needs to take life-saving injections every fortnight. However, government departments are passing the buck to release money for her treatment.
Gaucher’s disease, a lysosomal storage disorder characterised by accumulation of fat on organs and tissues, is caused by deficiency of a particular enzyme that breaks down fat molecule. The absence of enzyme-replacement therapy can damage the patient’s liver, brain and spinal cord.
Revathi underwent surgery for removal of her spleen five years ago and since then has been on enzyme-replacement therapy once every fortnight at the Indira Gandhi Institute of Child Health (IGICH). But from January 20, she hasn’t been able to go there as the government is yet to release funds for her treatment.
She is among 20 children waiting for the government to release Rs 8 crore for their treatment. February 28 is observed as Rare Diseases’ Day to create awareness about such diseases.
“Revathi was well till the fifth year. But gradually, we noticed her tummy swelling up. We took her to a couple of government hospitals and finally learnt she was suffering from a rare disorder,” said her father Shivashankar G, a weaver from Yelahanka.
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