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Rare disease haunts 9-year-old, no help from govt

india Updated: Jul 18, 2013 20:42 IST

Afflicted with a rare disease, that requires a fortune to treat, the parents of a 9-year-old boy in Jammu, are groping in the dark as their son, being deprived of any assistance from the state government, is gradually slipping into an abyss.

Jaskirat Singh, who is suffering from primary immuno deficiency disorder, a life-threatening disease, is yet to get any assistance from the Omar Abdullah government, even after waiting for three years since in 2010 the deputy commissioner's (DC) office cleared his case with recommendation to the medical aid committee (MAC) suggesting that the family needs Rs 18000 to Rs 22000 per month as their son's medical expenditure.

The disease, which has been a bane of little Jaskirat's life since his birth, compels him to visit the PGI Chandigarh's pediatric department regularly since October 2009. And instead of spending in toys or books, Jaskirat's parents have been splurging in buying costly injections worth even R28, 000 to make their son survive a little longer.

"The officials had assured us that the CM headed MAC would meet us and decide over granting financial aid for Jaskirat's expensive medical treatment. We have been approaching the officials regularly. But nothing has worked out so far,"lamented Jaskirat's parents.

However, with the CM, yet to take the final decision regarding the grant, the 9-year-old's parents have resorted to the NGOs for help.

"The district administration had promised me a prompt move of Jaskirat's case. But we are yet to get any assistance from them. It is very difficult to afford such a huge expenditure every month,'' said Jaskirat's father Tarwinder Singh, an unemployed, who has already exhausted all his savings except some philanthropic support.

Jaskirat's family has been living in anticipation lest the delay claims their son's life. "Now even the doctors have said that if Jaskirat misses a dose, it will prove fatal for his life, feared Tarwinder.

Meanwhile, he has appealed the mass to extend their help. Donations can be made at Account No. 1460000101147603 of Punjab National Bank, Shastri Nagar, Jammu (J&K).