Representative image of a patient.
Credit: iStock Photo
An Indian-origin teenager, who died from a rare disease while in a legal fight with a National Health Service (NHS) trust in the UK to allow her to travel abroad for an experimental trial that she hoped could prolong her life chances, has been named for the first time after court restrictions were lifted.
Sudiksha Thirumalesh, 19, suffered from a rare mitochondrial disorder and was fighting against being moved to end-of-life palliative care when she died following a cardiac arrest last week.
Her family sought a Court of Protection order on Friday which allowed them to share her name publicly for the first time.
"After a year of struggle and heartache, we can finally say our beautiful daughter and sister's name in public without fear: She is Sudiksha. She is Sudiksha Thirumalesh – not ST," said her brother Varshan Chellamal Thirumalesh as he read out a statement outside the Royal Courts of Justice in London, alongside parents Thirumalesh Chellamal Hemachandran and Revathi Malesh Thirumalesh.
“Despite our grief and the continuing shock over everything we have been through, today a part of us is at peace. Sudiksha was a wonderful daughter and sister who we will cherish forever. We cannot imagine life without her," he said.
The court is expected to rule on Monday about whether the NHS Trust and clinicians who treated Sudiksha can also be named. The family say they want to be able to tell their story openly and help others in a similar situation.
“We seek justice for Sudiksha today, and for others in her situation. We have never been out for revenge, we just want justice and to be able to tell our and Sudiksha's story," her brother added in the family statement.
According to court reports, 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, there were reportedly disagreements between the family and the medical experts caring for her over what was in the teenager’s best interests.
According to UK media reports, Sudiksha’s family is planning to bring an appeal against a previous ruling which said the teenager had a 'profound inability to contemplate the reality of her prognosis'.
The courts were told that she was a 'fighter' and had told a psychiatrist: "This is my wish. I want to die trying to live. We have to try everything."