A man working with the Delhi Police has appealed to Prime Minister Narendra Modi for help to treat his seven-year-old daughter who has been diagnosed with a rare genetic disorder. The cost of the treatment would amount to Rs 2.5 crore, said Sushil Kumar, a Class IV employee in the police department.
"Namaste (Prime Minister Narendra) Modiji, my name is Mahi. I am aged 7 and my height is not increasing. Will you help me? I want to become a doctor when I grow up. Will you please arrange medicine for me please," Mr Kumar's daughter is heard appealing in the video with folded hands.
Mr Kumar's daughter has been diagnosed with Morquio syndrome (MPS) IVA, a rare genetic disorder that can lead to severe short stature, progressive deformity of the spine, among other complications. A disorder leads to a very poor quality of life and limited life span of the affected individual.
Mr Kumar, who earns Rs 27,000 monthly, said that he has taken a personal loan of 10 lakh rupees in addition to a loan of Rs 1 lakh from the police department to cover the treatment cost.
"The enzyme for replacement is manufactured by only one US based company (Biomarine) to the best of our information.The cost per vial as quoted by the company is USD 1068 (INR 77, 910). As each vial contain 5 mg of drug, Mahi would need 30 mg per week with her present weight of 15 kg. The cost of treatment per year would be USD 333,216 (INR 24,308, 107) excluding freight charges. Mahi needs to be evaluated every 6 months for a response to therapy," a note from AIIMS, Delhi said.
Sushil Kumar has requested the government to get the medicines shipped to India so that his daughter can receive treatment in AIIMS hospital itself.