The Andhra Pradesh government has sanctioned Rs 1 crore for the treatment of a two-and-a-half-year-old child Honey, who has a rare genetic disorder called Gaucher disease. The state government has also helped the child’s family secure the drugs for the first phase of treatment, by coordinating with the drug manufacturer. Gaucher disease is a rare condition, with only 14 children in India known to be suffering from it, said Himanshu Shukla, district Collector of BR Ambedkar Konaseema. "The Area Hospital in Amalapuram is the first government hospital in the country where treatment for the disease is being provided,” he said.
The child’s condition came to the state government’s notice when Chief Minister YS Jagan Mohan Reddy recently visited the flood-affected areas in BR Ambedkar Konaseema district. The child's parents had turned up holding a placard, which was noticed by CM Jagan who stopped his convoy and spoke to them. After hearing their concerns, CM Jagan assured complete medical assistance to the child. He promised not only to sanction funds for the child's treatment but also for her education and overall well-being.
Gaucher disease affects the bones and liver, as a result of the building up of fatty substances in certain organs – especially the spleen and liver – causing organ enlargement and affecting their functioning. The fatty substances can also build up in bone tissue, causing the bones to weaken and increasing the risk of fractures. In affected persons, an enzyme that breaks down these fatty substances fails to work properly, and treatment often involves enzyme replacement therapy.
In total, Honey needs at least 52 injections to be administered, with each injection costing Rs 1.25 lakh. The state government has coordinated with the injection manufacturer and secured the first lot of 13 injections to begin the girl's treatment. BR Ambedkar Konaseema district Collector Himanshu Shukla handed over the first set of 13 injections on Sunday, October 2, to the girl's family at the government Area Hospital in Amalapuram. The district Collector submitted a proposal to the state government on the funds needed. Accordingly, a sum of Rs 1 crore was sanctioned for the treatment. The Collector added that a monthly pension would also be given to Honey’s family.
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