‘ST’ revealed: Teenager who bravely fought doctors’ attempts to withdraw her life support until her dying moment can FINALLY be named as judge lifts gagging order
- The bright 19-year-old girl died while locked in an extraordinary legal fight
- Until now she could only be identified as ‘ST’ – even after her death last week
A teenager who bravely fought her doctors’ attempts to withdraw her life support until her dying moment can finally be named after a gagging order was lifted.
Pictured for the first time, this is Sudiksha Thirumalesh – the bright 19-year-old girl who died while locked in an extraordinary legal fight with an NHS Trust.
Until now she could only be identified as ‘ST’ – even after her death last week – because of draconian reporting restrictions which had shrouded her case in secrecy.
Sudiksha had been desperate to put her name to her heart-breaking story when she passed away after a cardiac arrest last Tuesday.
The remarkable teen died just four days after speaking anonymously in the Mail about her ordeal and unwavering desire to fight for the chance to live from her hospital bed.
‘Don’t forget the order….I want everyone to know, I want everyone to know what is happening,’ the defiant teenager was noted as saying in the application to lift the restrictions this morning.
Pictured for the first time, this is Sudiksha Thirumalesh – the bright 19-year-old girl who died while locked in an extraordinary legal fight with an NHS Trust
The parents of Sudiksha Thirumalesh, Revathi Malesh Thirumalesh (left), Thirumalesh Chellamal Hemachandran (centre), and Sudiksha’s brother, Varshan Chellamal Thirumalesh, give a statement outside the Royal Courts of Justice in central London
In the midst of their grief, her family was forced to continue her battle at the High Court this morning after travelling to London from their home in the Midlands.
Following the hearing, her devoted older brother Varshan read a statement from the family outside court saying: ‘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.
‘Sudiksha was a wonderful daughter and sister who we will cherish forever. We cannot imagine life without her.
‘We seek justice for Sudiksha today, and for others in her situation.’
The family said they had been left traumatised by the NHS Trust’s decision to take court action to remove Sudiksha’s life-preserving treatment and impose the blanket restrictions.
Sudiksha suffered from mitochondrial depletion syndrome and had been hospitalised last year after contracting Covid-19 which worsened her degenerative condition.
The previously outgoing teenager, who enjoyed watching Love Island and going for coffee with friends, was left reliant on a ventilator, a feeding tube and regular dialysis. Doctors treating her argued that, due to her deteriorating and incurable condition, the kindest and most responsible course would be to ‘de-escalate her intensive care’ and make her as comfortable as possible.
In the midst of their grief, her family was forced to continue her battle at the High Court after travelling to London from their home in the Midlands
Andrea Williams, chief executive of the Christian Legal Centre which is supporting the family, said the ‘disturbing case’ demonstrated the ‘urgent need for overhaul’ in the judicial and health systems
Despite her difficulties, the remarkable straight A student was determined to live long enough to travel to North America for what she hoped would be potentially life-extending clinical trials of nucleoside therapy.
Her doctors said that they would not stand in the way of a transfer to North America if she were to get a place on a clinical trial, but her family say the draconian reporting restrictions prevented her from going public and fundraising to raise the £1.5m needed to make the journey.
This afternoon her family said: ‘We are deeply disturbed by how we have been treated by the hospital trust and the courts. We have been gagged, silenced and most importantly, prevented from accessing specialist treatment abroad for Sudiksha.
‘Had she been allowed to seek nucleoside treatment six months ago it may well be that she would still be with us and recovering.
‘Sudiksha said she wanted ”to die trying to live”. This is what she did. We are so proud of her.
‘We did not look for this fight, this fight came to us from a ”system” that too readily gives up on life. We were brutally silenced, intimidated, and taken to court in the hour of our need.
‘It is shocking that a family in the middle of stress and tragedy had a threat of imprisonment hanging over their heads,’ they added.
Breaching a court ordered reporting restriction is a contempt of court and, while rare, can technically result in a custodial sentence.
Her case was notable when compared to other end-of-life cases because Sudiksa was an adult and able to communicate her unwavering will to live.
Yet a judge in August ruled that she lacked the mental capacity to make her own decisions or even instruct her own lawyers.
The decision was made despite two court appointed psychiatrists stating that she did have ‘capacity’ with one noting that she was ‘comfortable, smiling, alert and in clear consciousness’.
Doctors successfully argued that her refusal to accept their view was a sign of delusion and that the Court of Protection should decide her fate.
She had launched an appeal against the decision but sadly died before it could be heard.
Her family’s lawyers confirmed this afternoon that the family will be pursuing her appeal despite her death – because of the potential implications of the ruling on case law.
‘Sudiksha was called ”delusional” for saying she wanted to live. The ruling from the judge was cruel, and no patient should be treated in this way.
‘We have never been out for revenge, we just wanted justice and to be able to tell our and Sudiksha’s story.’
The family are still fighting for restrictions on identifying the NHS Trust, the hospital and the clinicians involved. Justice Peel reserved judgement on the matters until Monday.
Andrea Williams, chief executive of the Christian Legal Centre which is supporting the family, said the ‘disturbing case’ demonstrated the ‘urgent need for overhaul’ in the judicial and health systems.
‘This Christian family has shown true courage in the face of opposition from the NHS and the Court of Protection,’ she said.
‘This profoundly disturbing case has demonstrated the urgent need for an overhaul into how end-of-life decisions are made in the NHS and the Courts.
‘There is an urgent need for a more open and transparent system. Justice is done in the light and not behind closed doors.
‘We are concerned about how many other patients and families have been through similar ordeals and have had to suffer in silence,’ she added.
She said that the case was a ‘wake up call’ for the government to set up a public inquiry into the practices of the Courts surrounding end of life cases.
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