27 September 2023 , 08:06
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A tragic teenager wrote heartbreaking notes as she was locked in an end-of-life battle with doctors.
Sudiksha Thirumalesh, 19, had a rare degenerative disease and died from a cardiac arrest amid a row with an NHS Trust to remove her life-preserving care.
Her devastated parents argue the notes showed she "100 percent had capacity until the very end" after a judge ruled last month she lacked the mental capacity to make her own decisions.
The former straight-A student had mitochondrial depletion syndrome but contracted Covid last year. The virus left her relying on a ventilator, a feeding tube, and regular dialysis. But she could speak in short bursts and write notes or send texts. In some of these, she asked for adjustments to her care.
The parents of Sudiksha Thirumalesh, Revathi Malesh Thirumalesh (left), Thirumalesh Chellamal Hemachandran (PA)She also pleaded for her mum, said she had back pain and told her dad she was sorry for showing "anger". Thirumalesh Hemachandran, 55, told the Daily Mail: "My daughter 100 per cent had capacity and she had that capacity until the very end, there is no doubt about it. These notes show that."
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In one of the notes, Sudiksha said "I want my mum with me all the time" and in another: "I want her now, pls call". Another stated "Please listen to me", adding: "Everyone is relying on the machine and giving pain killer." She also refers to her "tummy hurting" and asked for her feeding tube to be adjusted. In another message, she said a medical professional treating her "doesn't understand my pain".
Her parents vowed to continue her legal battle to prove the courts wrong and ensure no one else has the same experience. Dad Thirumalesh said: "When Sudiksha was alive she was so upset about the ruling and we feel like we owe it to her to fight her appeal on her behalf."
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 court 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.
The trust cannot be named for legal reasons, told the court the teenager was "actively dying" and de-escalating her intensive care was the most humane decision. Sudiksha died on September 12. The family went to the High Court last week to remove reporting restrictions preventing her name from being published in the press. They are still fighting for restrictions on identifying the NHS trust, hospital and clinicians involved to be lifted.