Parents of Sudiksha Thirumalesh reveal their anger and grief

EXCLUSIVE: The parents of Sudiksha Thirumalesh – only known as ‘ST’ until today – reveal their anger and grief after their daughter’s death which saw them dragged through the courts after trying to raise money for her medical treatment overseas

Family of Sudiksha Thirumalesh have now been able to identify their daughter

Finally, they can say her name publicly – albeit through a haze of tears.

Today, after a gruelling six-month legal battle, the family of the girl known until now as ST – the seriously ill 19-year-old, who so bravely fought NHS doctors in a desperate attempt to receive what her family hoped would be life-preserving treatment – can, at last, reveal her identity, after a judge lifted a draconian court order banning them from doing so.

Now, she is ‘ST’ no more – but Sudiksha Thirumalesh. And along with her name, we can at last see her face: her sweet smile, her brown eyes and long, flowing dark hair.

These photos from the family’s album, exclusively printed here in the Mail, show all too clearly the vivacious, sweet-natured, high-achieving teenager she was, until her sudden death last week from a cardiac arrest.

Tragically, Sudiksha died before she could be freed from the legal order which had effectively gagged her. But not before she gave a defiant battle cry to live in an exclusive interview with the Daily Mail in which she said: ‘By the time you read this, I could be dead. That’s according to my doctors… but I am a fighter and will continue.’

Although her condition worsened, the determined teenager had told her parents: ‘I want everyone to know, I want everyone to know what is happening.’

Now, she is ‘ST’ no more – but Sudiksha Thirumalesh. And along with her name, we can at last see her face: her sweet smile, her brown eyes and long, flowing dark hair

Her brother, Varshan Thirumalesh, nine years older than Sudiksha, recalls the disturbing moment his beloved sibling died just over a week ago

Her parents, too, can now reveal themselves – her father Thirumalesh Hemachandran and mother Revathi Thirumalesh, both 55

Indeed, this is a story that will haunt every parent: the idea that an intelligent, determined young woman, who so desperately wanted to try everything to live, was dragged through the courts by her doctors seems almost horrifically dystopian.

Her parents, too, can now reveal themselves – her father Thirumalesh Hemachandran and mother Revathi Thirumalesh, both 55. The couple – who migrated to the UK from India in 2000 – ran a local restaurant together until they were forced to give up the family business in 2022, and sub-let it, to look after their daughter full-time.

The toll of Sudiksha’s death, the loss of their only daughter, is all too apparent – as is their anger at the legal and medical system which they feel was so marshalled against them, effectively preventing them, they say, from fundraising for Sudiksha to receive medical treatment in Canada.

If she had received this treatment, her family believe her life could have been extended, in spite of her serious degenerative disease.

So – they say – ‘the past year has been one of struggle, even torture… at the hands of the hospital and the Court of Protection’.

And, in this exclusive interview with the Mail, they are emphatic, even in the fog of their desperate grief.

‘She felt imprisoned and as a family we felt helpless because we were condemned by the doctors who strongly believed that accelerating her death was the only option,’ her father tells me.

Her parents mother Revathi Malesh Thirumalesh and father Thirumalesh Chellamal Hemachandran – fought for life saving treatment under a cloud of legal gagging order

For her mother, the loss is particularly acute, given that she stayed with Sudiksha in hospital around the clock, abandoning her job and almost every element of her personal life to do so

READ MORE: Charlie Gard’s mother is one of the few people who understand the pain of losing a legal battle to keep your child alive – so as the family of teenager ‘ST’ fight to reveal her identity in court after her death, she describes the unique bond they’ve forged

‘We felt like the clinicians were waiting for Sudiksha’s death. We feel that the ICU doctors were playing God and we detest it.’

However, her doctors said before her death that, given Sudiksha’s deteriorating and incurable condition, the ‘kindest’ thing would be to ‘de-escalate the intensive care’ and make her as comfortable as possible. They asked the Court of Protection to decide what course of treatment was in her best interests, but Sudiksha passed away before the court could issue a ruling on whether she should be moved to palliative care.

Just two weeks ago, Sudiksha had defiantly told the Mail: ‘By the time you read this, I could be dead. That’s according to my doctors who, for the last year, have repeatedly told me that I have had only days to live. But I am a fighter and will continue to fight.’

That fight – so moving, so powerful – was to end much sooner than Sudiksha wanted. Her brother, Varshan Thirumalesh, nine years older than Sudiksha, recalls the disturbing moment his beloved sibling died just over a week ago. ‘Sudiksha’s final moments were tragic. She felt like she was trapped in a desert,’ he told me. ‘Sudiksha was aware of everything that was happening around her; she was squeezing our hands when we held hers to indicate that she was not willing to give up.

‘She struggled to remain alive with low oxygen supply and passed away at 10.15pm on Tuesday, September 12, in front of my parents and I.’

Her heartbroken mother and father tell me they feel their ‘world is shattered upon losing Sudiksha’.

‘Her struggles and battles in the ICU will continue to haunt us for the rest of our lives,’ said her mother. ‘We are emotionally, financially and physically drained after going through this one year, two month-long journey in ICU, next to Sudiksha’s bedside.’

Last year, however, she was hospitalised after contracting Covid, which worsened her illness, and led to her being given a tracheostomy to support her breathing

The previously outgoing teenager had been offered a place at a selective sixth form before her illness worsened

For her mother, the loss is particularly acute, given that she stayed with Sudiksha in hospital around the clock, abandoning her job and almost every element of her personal life to do so.

In those long hours, they chatted, played board games, even researched the A-levels Sudiksha was so determined to do when – she hoped – she would eventually be released from the intensive care ward that doctors insisted would be her final home.

Indeed, despite being reliant on a ventilator, a feeding tube and regular dialysis, the previously outgoing teenager – who had received excellent GCSE results in 2021, gaining straight grade 7s in biology, chemistry, physics, English language, mathematics, computer science (roughly equivalent to the old grade As) and a grade 6 in English literature (grade B), and had been offered a place at a selective sixth form before her illness worsened – was actively pursuing an offer from her local authority to resume her A-levels from hospital. A long-held dream of working in healthcare, pursuing a degree in Healthcare Science, was very much alive.

Even from her hospital bed, Sudiksha had room for fun, too, enjoying watching Love Island, messaging friends on Instagram and scrolling through social media. The lively girl who enjoyed karaoke nights with her family and adored playing the guitar had a spirit that was by no means extinguished by her illness.

Of course, Sudiksha was always aware the odds were stacked against her. Yet despite suffering from mitochondrial depletion syndrome (MDS) – an extremely rare genetic disorder which limits the functioning of the body’s cells; the same condition as suffered by baby Charlie Gard, whose life support was withdrawn following a bitter court battle over his treatment in 2017 – she lived as independent a life as she could after her diagnosis aged 15.

While she suffered from kidney damage, muscle weakening and a loss of hearing, Sudiksha insisted right to the end that it had not affected her brain, and she was perfectly capable of making decisions about her medical treatment

Last year, however, she was hospitalised after contracting Covid, which worsened her illness, and led to her being given a tracheostomy to support her breathing.

Yet while she suffered from kidney damage, muscle weakening and a loss of hearing, Sudiksha insisted right to the end that it had not affected her brain, and she was perfectly capable of making decisions about her medical treatment.

Despite her lucidity and two court-appointed psychiatrists agreeing she had no signs of mental impairment, a judge disagreed, last month ruling that she lacked the mental capacity to make her own decisions or even instruct her own lawyers.

Doctors had argued her refusal to accept imminent death was a sign of ‘delusion’ and the Court of Protection should decide her fate.

The judge agreed that because ‘she does not believe what her doctors are telling her about the trajectory of her disease and her likely life expectancy’, she cannot choose between treatment options ‘on an informed basis’.

The stage was set, then, for a last-ditch, traumatic legal fight. While her doctors argued she was ‘actively dying’, Sudiksha wanted to travel to have nucleoside therapy – an experimental treatment which her family hoped might provide some improvement in her condition.

The treatment works by potentially restoring the functioning of mitochrondria.

While her doctors would not stand in the way of her going to North America for treatment, they were doubtful she could survive the trip, and felt reducing her intensive care was the best way forward.

Her heartbroken mother and father tell me they feel their ‘world is shattered upon losing Sudiksha’

Her father tells me that Sudiksha was ‘in the same fighting spirit till her last breath… She went through a traumatic experience of anticipating her death – this is something we would not even wish upon our worst enemy

Sudiksha said herself: ‘My doctors are saying because they cannot treat my MDS, I should not be having any more life-preserving treatment. Instead I should be filled up with opioids so I will lose consciousness and die.

‘I do not want this, and want to try the treatment being offered abroad. It might be a small chance, but it is my only chance.’

‘Even during that [last] week, Sudiksha remained fully conscious and she was actively communicating and praying; she did not deteriorate until September 11.

‘She told us that no matter what happens to her, her name must be revealed as a testimony to her long-standing battle in ICU.’

The kind of daughter anyone would have wished for, Sudiksha was considerate, hard-working, clever and devoted to her tight-knit Christian family. A natural leader, until only a few years ago she enjoyed spending nights under the stars camping with the Girl Guides and seized any chance she could to play sports and have fun. A keen knitter, she also relished any chance to beat her brother at car racing games.

All had seemed well when she was born in 2004, weighing just over 7 lb. But when Sudiksha was around four, her hearing began to fail and her eyelids drooped.

‘She was at nursery and during one of the lessons a cardboard box fell from the top of the wardrobe,’ her mother recalls.

‘The whole class heard the noise except her. We were told by her teacher to check her hearing.’

Sudiksha was considerate, hard-working, clever and devoted to her tight-knit Christian family (Pictured at her 10th birthday party)

‘We were just told her hearing was deteriorating, nothing more. Except for her hearing loss and drooping eyelids [a condition known as ptosis], her overall health was fine,’ her father said.

Cochlear implants followed, which enabled her to hear clearly, and she had corrective surgery on her eyelids.

She remained in mainstream education, where she continued to be star of the show.

Quite simply, she loved life. Whether it was joining the Brownies, playing netball or studying hard at school, she gave everything her all. Netball was a particular favourite, and she even won a Sports Leadership Award for teaching sport to younger children in primary schools.

It was at secondary school, aged 12, when she began to show signs of fatigue and was eventually forced to give up sports. Her parents realised something was wrong with their spirited, affectionate child.

Three years later, she was diagnosed with MDS – but still insisted on studying hard. It’s astonishing that she received such good GCSE results, considering that she simultaneously had the reality of her diagnosis to cope with, too.

It was only when her kidneys began to suffer in 2022 that her illness began to seriously disrupt the family’s life and her parents made the huge decision to give up their business, instead using their life savings, even selling family jewellery, to survive.

‘Our livelihood was hugely affected but that did not bother us,’ they said. ‘Family comes first to us. We are a simple, nuclear family with strong faith and devotion in Christianity. We gave good education to both our children, which as a family we believe is the only treasure that cannot be stolen.

Revathi Malesh Thirumalesh (left), Thirumalesh Chellamal Hemachandran (centre), and Sudiksha’s brother, Varshan Chellamal Thirumalesh, give a statement outside the Royal Courts of Justice

‘We hoped for Sudiksha to pursue her A-levels and get into a good university, following the footsteps of her brother.

‘We also hoped she would get married and have children of her own. She was such a selfless, loving and caring person.’

Today, their consolation is, they say, that they believe Sudiksha is ‘in a better place, with God’.

Her mother admits to being riven with anxiety and depression after her daughter’s death, something only partly relieved by carrying Sudiksha’s hearing aids with her wherever she goes. ‘By doing this,’ says her son, ‘she feels like Sudiksha is always by her side.’

Their shock and anger has not even begun to vaguely lessen. As her father says: ‘We feel like the justice and the medical system were working hand-in-glove to fail our daughter and her wishes to seek the nucleoside therapy.

‘We feel frustrated because we were trapped in the legal mess while caring for our beloved daughter who was always our focal point. We have run out of tears to cry. So we are still fighting for Sudiksha and her brave legacy.’

Now comes the moment no parent would ever wish for: planning their own child’s funeral, something Sudiksha refused to discuss.

‘She must always be remembered for her optimism and positive attitude,’ said her father. ‘Sudiksha contemplated death many times but was reluctant to talk about her funeral. She loved flowers so we want her funeral to be carried out with plenty of floral decorations.

‘She also loved dressing up like a princess with lots of jewellery and accessories, and we will be fulfilling that at her funeral.’

When asked how significant it is to tell Sudiksha’s story today, her mother is clear she gave a voice to the voiceless, albeit anonymously at first.

‘It is important for us to tell her story because she is a role-model to people living with rare and unique conditions. It deeply saddens us that she was unable to do it herself, but we will continue to fulfil her wishes.

‘We will continue to fight to bring justice to our daughter. Her brother feels the battle is not over until her hard work and struggles get the limelight.

‘She was able to take comfort from strong and supportive comments following her Daily Mail article. However, she felt really upset that she could not say her name or the name of the hospital she was treated at so that people could pray for her.’

Today, Sudiksha’s name is no longer concealed – and, her family hope, it will never be forgotten.

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