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Family of a teenager who died fighting doctors’ attempts to withdraw her life support vow to continue her extraordinary legal battle even after her death and prove the courts wrong

The family of a sick teenager who died while fighting doctors‘ attempts to withdraw her life support have vowed to continue her legal battle in an extraordinary bid to prove the courts got it wrong about her.

Sudiksha Thirumalesh, 19, who suffered from a rare genetic disorder, died earlier this month in the midst of a months-long fight with an NHS trust, which cannot be named, while she was subject to a strict gagging order. 

Just weeks before Sudiksha’s death she had launched a legal appeal after a judge ruled that she did not have the ‘mental capacity’ to make decisions about her own medical care and that the courts should determine her future.

The ruling was made despite two court-appointed psychiatrists insisting that she did have ‘capacity’, with one noting that she was ‘comfortable, smiling [and] alert’.

‘Sudiksha was devastated by the decision, but she sadly died before her appeal could be heard in court,’ her brother Varshan, 27, said last night. ‘Even until her last breath she was fully conscious and she had full capacity. We feel the ruling wasn’t right and we want to try to change that.’

Sudiksha Thirumalesh, 19, died earlier this month from a rare genetic disorder

Sudiksha Thirumalesh, 19, died earlier this month from a rare genetic disorder

Her family, who live in the Midlands, said they will now continue pursuing her appeal on her behalf.

Varshan added: ‘She was able to communicate her wishes. She would sometimes use her speaking valve or a notebook and pen. She would write questions to the nurses and could express her concerns.’

Sudiksha was hospitalised last year after contracting Covid. She died on September 12, just days after speaking anonymously in the Mail about her ordeal.

She said: ‘My next stop is the Court of Appeal where I hope to establish my right to choose my own lawyers and to make my own medical decisions. This system urgently needs to change and I pray no one else will ever have to go through what I and my family have been made to suffer this past year.’

Sudiksha wanted to travel to North America for what she hoped would be potentially life-extending clinical trials of nucleoside therapy. While her doctors claimed that they would not stand in her way, the family say the gagging clauses prevented her from fundraising for the £1.5 million needed to make the journey and pay for the treatment.

As Sudiksha’s condition worsened in recent months she was left reliant on a ventilator, a feeding tube and regular dialysis. However, doctors successfully argued that her refusal to accept their view that she was ‘actively dying’ was a sign of delusion, and so the Court of Protection should decide her fate. They said that the kindest course of action would be to ‘de-escalate her intensive care’.

Following her death after a cardiac arrest, her mother Revathi, 55, said: ‘We don’t want this to happen to anyone else; Sudiksha must be the last case.’

The family went to the High Court on Friday to remove the strict reporting restrictions which had shrouded the case in secrecy. Before the hearing, Sudiksha could be identified only as ‘ST’.

Sudiksha Thirumalesh with her brother Varshan and, right, in hospital as her condition deteriorated

Sudiksha Thirumalesh with her brother Varshan and, right, in hospital as her condition deteriorated 

Sudiksha Thirumalesh's family, who live in the Midlands, said they will now continue pursuing her appeal on her behalf

Sudiksha Thirumalesh’s family, who live in the Midlands, said they will now continue pursuing her appeal on her behalf

They were finally able to tell her story in an exclusive interview in yesterday’s Daily Mail.

Andrea Williams, chief executive of the Christian Legal Centre which is supporting the family, said the judgment on Sudiksha’s capacity must be ‘overturned’.

‘Sudiksha’s case has revealed flaws in law and medicine when it comes to assessing whether a person has mental capacity to make choices on their own behalf,’ she said. ‘The lack of transparency in the system cannot go unchallenged.’

The family are still fighting to lift the restrictions on identifying the NHS trust, the hospital and the clinicians involved. Mr Justice Peel reserved judgment on the matters until tomorrow.

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