A man working for the Delhi Police has appealed to Prime Minister Narendra Modi for help treating his seven-year-old daughter, who has been diagnosed with a rare genetic disorder. The cost of the treatment would be Rs 2.5 crore, said Sushil Kumar, a Class IV police officer.
“Namaste (Prime Minister Narendra) Modiyou, my name is Mahi. I am 7 years old and my height is not increasing. Do you want to help me? I want to be a doctor when I grow up. Would you please arrange medication for me, please,” Mr. Kumar’s daughter is heard shouting in the video, hands folded.
Mr Kumar’s daughter has been diagnosed with Morquio syndrome (MPS) IVA, a rare genetic disorder that can lead to severe short stature, progressive spinal deformity, among other complications. A condition leads to a very poor quality of life and a limited lifespan for the affected person.
Mr Kumar, who earns Rs 27,000 monthly, said he has taken a personal loan of Rs 10 lakh in addition to a loan of Rs 1 lakh from the police to cover treatment costs.
“The replacement enzyme is, to the best of their knowledge, manufactured by only one US-based company (Biomarine). , Mahi would require 30 mg per week at her current weight of 15 kg. INR 24,308, 107) excluding freight charges Mahi should be evaluated every 6 months for response to therapy,” a note from AIIMS, Delhi said.
Sushil Kumar has asked the government to have the medicines shipped to India so that his daughter can be treated at the AIIMS hospital herself.