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HC asks Centre whether a 5-year-old child gets treatment in USA afflicted with rarest disease i.e. ‘2 persons in 1.3 billion’

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The Delhi High Court has asked the Central Government to look into the case of a 5-year-old girl who has been afflicted with one of the rarest diseases recorded in the human history i.e. 2 persons in 1.3 billion, for her treatment in the United States of America considering as it as rare case for treatment of its most needy citizens. 

A Single Judge bench of Justice Najmi Waziri has passed the directions while hearing a plea by a mother whose daughter has been suffering from one of the rarest disease recorded in the Human History. She has informed the Court that there is some hope for treatment of her child in the United States of America, where ameliorative treatment have been administered to some patients similarly afflicted. The treatment involves multiple operations on the brain, over a period of 6 months but for medical reasons, it can be performed only upon a person over 7 years of age. The expense in this regard would run into crores of rupees, which she cannot afford. 

The Court had earlier directed the Delhi Government to assist the lady in the treatment of her child as she cannot afford the high expenses in her daughters treatment from the maintenance she received from her husband. 

The mother has requested the High Court for some more immediate assistance such as requirement of a portable ventilator, tubes and filters etc. “The court is of the view, that looking at the unprecedented nature of affliction and the uniqueness of the case, the GNCTD should consider the mother’s request compassionately and supply the requisite medical equipment to the mother before the next date,” said the Court. 

The petitioner-mother has further submitted that there is some hope for treatment of her child in the United States of America, where ameliorative treatment have been administered to some patients similarly afflicted. The treatment involves multiple operations on the brain, over a period of 6 months but for medical reasons, it can be performed only upon a person over 7 years of age. The expense in this regard would run into crores of rupees, which she cannot afford. She submitted that the child has been responding well to the care and treatment given to her, courtesy the Governemnt of Delhi (GNCTD). She said that the child responds to her, to her grandmother and a few other persons whom she recognises, her physical health also has improved. Nevertheless, she has to be kept on a ventilator for approximately 10 to 12 hours a day. For this purpose, a trained nurse has been engaged. The cost of her services exceeded Rs.50,000/- per month during the pandemic related lockdown. In terms of the court’s earlier order of August 2018, GNCTD pays Rs.12,000/- per month, for the services of the private nurse. She said is not in a position to meet this recurring expense.

Also Read: Delhi HC dismisses appeal against maintenance awarded to elderly mother

“Let the GNCTD look into reimbursement or direct payment of the revised and enhanced service charges for such nursing services,” said the Court. 

The Court said,

As regards the treatment of the child in the USA, the Court considers it appropriate that the Government of India look into the matter and consider this rare case for treatment of its most needy citizen. Mr. Chetan Sharma, the learned ASG, has been requested to assist the Court in this regard.”

“Issue notice. Mr. Gaurang Kanth, the learned Standing Counsel for the Central Government, accepts notice. E-copies of the petitions be served upon him during the course of the day. Let an appropriate response of the Government of India be filed before the next date,

-directed the Court. 

Also Read: Allahabad High Court acquits convict serving life sentence after 14 years in jail

The father of the Child also made a statement before the court that he will pay the outstanding amount of maintenance around Rs 60,000/- to her wife before March 18 along with the instalment for the month of March. He also undertakes to pay regular maintenance amounts, in terms of the directions issued by the learned Family Court. He has requested the Court to meet the child on which the Court has agreed. 

The Court would now hear the matter on April 4.

Read the order here;

SAUMYA-SHUBHAM

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