Chief Justice & Judge Of Kerala High Court Donate Rs 25,000 Each For Treatment Of Children With Rare Diseases

The Chief Justice of the Kerala High Court, S Manikumar, and Justice Shaji P Chaly have deposited Rs 25,000 each in the special account created by the Kerala Government for the treatment of children with rare diseases.

"Taking note of the steps taken by the Kerala Legal Services Authority and the need to provide sufficient funds for the continuous treatment of children affected with rare diseases, we would deposit a sum of Rs.25,000 each to the credit of special account created for the treatment", said a division bench of Chief Justice Manikumar and Justice Shaji P Chaly in an order last week.

This notable development happened while the bench was considering a case related to children afflicted with a rare genetic disorder known as Lysosomal Storage Disorders (LSDs). LSDs affect multiple organs and cause progressive physical or mental deterioration over time. This rare disease affects 1 in 5000 births as a group.

Earlier, on January 22, the Court had made an appeal to the legal fraternity to contribute to the State level corpus fund for the treatment of children with rare diseases.

On October 5, the bench had directed the Government of Kerala to ensure that an amount of Rs 50 lakhs is exclusively earmarked for the purpose of treatment of children with rare diseases and be deposited in the special account.

Later, on noting that the Government had not deposited the amount as per the direction, the bench summoned the Principal Secretary to the Department of Health and Family Welfare, Mr. Rajan Khobragade, to appear before the bench on November 9.

On November 9, the Principal Secretary appeared before the bench and submitted that the amount has been deposited in compliance with the directions of the bench.

The Court had also directed the oil marketing companies to earmark an amount for the treatment of children with rare diseases from their CSR funds.

In this regard, BPCL and HPCL told the bench on November 9 that they can consider making contributions only on receiving a specific project proposal.   

The HPCL told the court that it was not in a position to make contributions as large amounts of contributions have already been made from its CSR funds for COVID-19 related activities in the current financial year.

As regards the earlier appeal made by the court to the legal fraternity to make contributions, Advocate Adithya Rajeev, the petitioner's counsel, told the bench that advocates were facing technical difficulties in making online payments to the special account. The court asked the counsel to inform the difficulties to the Health Department for taking effective steps to cure the technical problems.

The court was considering a petition filed by Lysosomal Storage Disorders Society which supports the cause of children afflicted with a rare genetic disorder known as Lysosomal Storage Disorders (LSDs). LSDs affect multiple organs and cause progressive physical or mental deterioration over time. This rare disease affects 1 in 5000 births as a group.

The treatment options for LSDs undergo a variety of therapies. According to the petitioner, the approximate annual cost for the treatment would be Rs.1,72,22,400/-. As a result, many children with LSDs are succumbing to the disorder due to lack of proper therapeutic care and medical support. The petitioner society collected the details of 15 children diagnosed to be suffering from treatable LSDs, who needs Government support for treatment.

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