7-year-old Mahi appeals PM Modi for treatment of rare genetic disorder that costs 2.5 crore
Diagnosed with a rare genetic disorder, a 7-year-old Mahi has appealed to Prime Minister Narendra Modi for help for the treatment. Sushil Kumar, father of Mahi is working with Delhi Police said the cost of the treatment would amount to ₹ 2.5 crore.
"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," the 7-year-old is heard appealing in the video with folded hands.
Mahi 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 very poor quality of life and limited life span of the affected individual.
Mahi's father, Kumar who is a Class IV employee, earns ₹ 27,000 monthly. He has taken a personal loan of 10 lakh rupees in addition to a loan of ₹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.
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