'I want to die trying to live': Tragic words of teen who can finally be named after NHS court fight

Sudiksha Thirumalesh had a rare mitochondrial disorder. Credit: PA

A courageous teen who battled NHS to keep her on life support can finally be named, a court has ruled.

Sudiksha Thirumalesh died after a legal battle with an NHS trust over her treatment - and now she can be named after a judge's ruling at the London Royal Court of Justice.

The 19-year-old, who had a rare mitochondrial disorder, was involved in a court fight with an unnamed NHS trust over whether she should be moved into palliative care.

The Court of Protection heard Ms Thirumalesh – who could “communicate reasonably well” with her doctors – wanted to travel to North America for a potential clinical trial, described as “experimental”.

Judges were told the A-level student was a “fighter”, and that she had told a psychiatrist: “This is my wish. I want to die trying to live. We have to try everything.”

However, the London Royal Court of Justice previously heard there was a “fundamental disagreement” between the family and the trust over the teenager’s care and what was in her best interests.

Sudiksha Thirumalesh's mum Revathi Malesh (left), dad Thirumalesh Chellamal Hemachandran (centre) and brother Varshan Chellamal Thirumalesh Credit: PA

Lawyers for the trust said Ms Thirumalesh, who was known as ST during the legal battle, was “actively dying” and was suffering severe respiratory episodes.

“It’s like drowning. She is able to sense what is happening,” Vikram Sachdeva KC told the court in July.

Ms Thirumalesh died on September 12 following a respiratory and cardiac arrest, and, on Friday, her family and their lawyers returned to the Court of Protection to make a successful bid to allow her and her family to be named publicly in relation to the case.

Bruno Quintavalle, representing Ms Thirumalesh’s parents Thirumalesh Chellamal Hemachandran and Revathi Malesh Thirumalesh, said “very far-reaching” restrictions had been put in place that meant “the parents are not even able to discuss privately with a friend the matters”.

“There are very serious issues that have raised a lot of public concern,” he said. “Public concern isn’t helped by the continuation of secrecy around proceedings.”

The barrister later said Ms Thirumalesh had said “don’t forget the transparency order”, and that she wanted “everyone to know what is happening” while she had a “feeling of powerlessness”.

The Royal Courts of Justice in London Credit: PA Images

Speaking outside of the Royal Courts of Justice in London after the hearing, the teenager’s brother, Varshan Chellamal Thirumalesh, said the family had been “gagged” and “intimidated”.

He said: “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.

“Despite our grief and the continuing shock over everything we have been through, today a part of us is at peace.

Victoria Butler-Cole KC, for the NHS trust, said the body had “no objection” to the late teenager or her parents being named.

The barrister said there may have been a “misunderstanding” of the scope of the restrictions, which she said meant people were not allowed to identify Ms Thirumalesh as the person “in connection with the proceedings”.

Sudiksha had a rare mitochondrial disorder Credit: Family handout/PA

“It would be ridiculous to have an order that banned you speaking about a family member completely,” she said, adding that it was “unfortunate the parents have not been made aware of that sooner”.

The judge asked if there was “nothing to prevent, for example, the family emailing, writing to friends, family, naming their daughter and saying the funeral is on such and such a date”.

“Of course not,” Ms Butler-Cole replied.

“It’s very unfortunate that the family were prevented from talking about their daughter outside of these proceedings,” she added.

Mr Justice Peel ruled that Ms Thirumalesh and her family can be identified on Friday, but a decision is yet to be made about whether the NHS trust and clinicians who treated her can be named.

A ruling is expected on Monday.

Want a quick and expert briefing on the biggest news stories? Listen to our latest podcasts to find out What You Need To Know…