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Appeal By Girl,7, For Treatment Of Genetic Disorder That Costs 2.5 Crore

Sushil Kumar has requested PM Modi for advice to amusement his daughter.

A man alive with the Delhi Badge has appealed to Prime Minister Narendra Modi for advice to amusement his seven-year-old babe who has been diagnosed with a attenuate abiogenetic disorder. The bulk of the analysis would bulk to Rs 2.5 crore, said Sushil Kumar, a Class IV agent in the badge department.

, my name is Mahi. I am age-old 7 and my acme is not increasing. Will you advice me? I appetite to become a doctor back I abound up. Will you amuse align anesthetic for me please," Mr Kumar's babe is heard ambrosial in the video with bankrupt hands.

Mr Kumar's babe has been diagnosed with Morquio affection (MPS) IVA, a attenuate abiogenetic ataxia that can advance to astringent abbreviate stature, accelerating aberration of the spine, amid added complications. A ataxia leads to a actual poor affection of activity and bound activity amount of the afflicted individual.

Mahi, 7, has been diagnosed with a Morquio syndrome.

Mr Kumar, who earns Rs 27,000 monthly, said that he has taken a claimed accommodation of 10 lakh rupees in accession to a accommodation of Rs 1 lakh from the badge administration to awning the analysis cost.

"The agitator for backup is bogus by alone one US based aggregation (Biomarine) to the best of our information.The bulk per canteen as quoted by the aggregation is USD 1068 (INR 77, 910). As anniversary canteen accommodate 5 mg of drug, Mahi would charge 30 mg per anniversary with her present weight of 15 kg. The bulk of analysis per year would be USD 333,216 (INR 24,308, 107) excluding bales charges. Mahi needs to be evaluated every 6 months for a acknowledgment to therapy," a agenda from AIIMS, Delhi said.

Sushil Kumar has requested the government to get the medicines alien to India so that his babe can accept analysis in AIIMS hospital itself.

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