LONDON, Aug 1 : An Indian-origin teenager, who died from a rare disease, has won a posthumous appeal against the UK’s National Health Service trust to allow her to travel abroad for an experimental trial hoping for prolonged life chances.
Sudiksha Thirumalesh, 19, who suffered from a rare mitochondrial disorder, was in a legal fight with the National Health Service (NHS) trust against being moved to end-of-life palliative care when she died following a cardiac arrest last year.
Sudiksha’s family continued the legal battle on her behalf for patients to decide the course of their treatment and a Court of Appeal judgment on Wednesday could have a wide-ranging impact on patients in a similar situation in future.
According to court documents, Sudiksha had been determined to fight on and wanted to be able to fly out to North America or Canada to explore clinical trials.
But reportedly there were disagreements between the family comprising her parents, Thirumalesh Chellamal Hemachandran and Revathi Malesh Thirumalesh, and brother Varshan Thirumalesh, and the medical experts caring for her over what was in the teenager’s best interests.
The Court of Appeal judgment concluded that Sudiksha had the mental ability to express her wishes related to her treatment.
“The decisions in this case related to Sudiksha, who, notwithstanding her terrible illness, was studying for A levels before contracting COVID which led to her long-term admission to ICU,” read the appeal judgment, presided over by a three-judge bench comprising Justice Eleanor King, Lord Justice Rabinder Singh and Lord Justice Jonathan Baker.
“She was a 19-year-old young woman who was fully conscious, was not suffering from any mental illness or brain damage and was communicating freely with both her family and the medical team caring for her.
“Whilst distressed on occasion, it was in the context of specific treatment. She was clear at all times in expressing her wishes, namely that she wanted to be provided with all active care possible, to try experimental treatment and to ‘die trying to live’,” it read.
The court noted that all who came into contact with Sudiksha agreed that she was a “remarkable” young woman, who was “hardworking, determined, and resilient.”
“The declaration of incapacity having been set aside, the presumption of capacity applied. It follows that in my judgment, this remarkable young woman had the capacity to make decisions in relation to her medical treatment and therefore had her wish to ‘die trying to live’,” Lady King noted as she granted the family’s appeal. (PTI)
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