Family of UK teen who died fighting rare disease speaks out

UK girl Sudiksha Thirumalesh died Sept. 12, 2023, after a legal fight to circumvent a ruling in the United Kingdom that she was not competent to make decisions about her care. | Credit: Christian Concern

A 19-year-old U.K. woman who died after a legal fight to circumvent a ruling that she was not competent to make decisions about her care, despite her desire to go abroad for experimental treatment, can now be publicly named as Sudiksha Thirumalesh.

Thirumalesh’s family praised her fight to live and forgave those who “seemed only to care about Sudiksha dying,” but they strongly objected to her treatment by the medical system and the courts that obstructed her.

“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,” Thirumalesh’s family said in a Sept. 22 statement. “Sudiksha was a wonderful daughter and sister who we will cherish forever. We cannot imagine life without her.”

Thirumalesh, from Birmingham, was previously called by the pseudonym “ST” due to legal restrictions on reporting under a court-imposed transparency order dating to March. The family was not allowed to identify the woman as the person connected to the legal proceedings.

The order came at the request of the unnamed NHS trust involved in her case, though an attorney for the trust has now disputed whether the gag order was as far-reaching as the family believed.

The woman had been suffering from a progressively degenerative mitochondrial disorder. She had hoped to travel to Canada to take part in experimental medical trials for nucleoside therapy that might help her survive, but doctors challenged her mental competence and ordered that she receive palliative care. She died from cardiac arrest late on Sept. 12.

“We seek justice for Sudiksha today, and for others in her situation,” the family said before quoting the woman. “Sudiksha said she wanted ‘to die trying to live.’ This is what she did. We are so proud of her.”

Justice Robert Peel of the Family Division of the High Court on Friday ruled that Thirumalesh and her family may now be named. However, the judge postponed a decision on whether to name the hospital, the NHS trust, and the clinicians involved in her case until the following week.

The family has said the ban on naming Thirumalesh and her relatives legally prevented them from publicly commenting and giving media interviews about her situation. They were not allowed to ask for prayers or raise money to pursue extraordinary treatment, estimated to cost about $1.9 million. The family also faces legal fees in her case.

Victoria Butler-Cole, the lawyer representing the NHS Trust, told the U.K. newspaper The Guardian there could have been a misunderstanding about the extent of the gag order. 

“It would be ridiculous to have an order that banned you speaking about a family member completely,” Butler-Cole told The Guardian. In her view, it was “unfortunate the parents have not been made aware of that sooner.”

Before her death, Thirumalesh was conscious and able to speak. She had done well in school but her health declined after she caught COVID-19 in August 2022. Her disease did not affect brain functioning, though she suffered health problems such as impaired sight, hearing loss, chronic muscle weakness, bone disease, and chronic lung and kidney damage.

She had been in intensive care for more than a year. She breathed using an artificial respirator, ate through a feeding tube, and underwent dialysis.

However, legal challenges from her doctors obstructed her efforts to seek experimental care abroad.

On Aug. 25 a judge agreed with an unnamed National Health Service trust’s doctors and ruled that Thirumalesh was unable to make decisions for herself. The medical professionals in charge of her treatment maintained that she was approaching, or had already begun, the final stage of her life and was “actively dying.” The NHS trust had asked the court to approve a palliative care plan for the woman that would have removed her from dialysis and thus resulted in death by kidney failure in a few days.

However, the two psychiatrists the hospital tasked with assessing Thirumalesh ruled that she was free from mental health issues and had the mental capacity to decide for herself.

Both Thirumalesh and her family objected to the ruling and had hoped to appeal it.

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“Sudiksha was called ‘delusional’ for saying she wanted to live,” the family said in its Friday statement. “The ruling from Mrs. Justice Roberts was cruel, and no patient and family should be treated in this way.

Thirumalesh’s family said they were “deeply disturbed” by their treatment by the hospital trust and the courts.

“We have been gagged, silenced, and most importantly, prevented from accessing specialist treatment abroad for Sudiksha,” the family said. “Had she been allowed to seek nucleoside treatment six months ago it may well be that she would still be with us and recovering.”

“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,” their statement continued. “It is shocking that a family in the middle of stress and tragedy had a threat of imprisonment hanging over their heads.

“We have never been out for revenge, we just want justice and to be able to tell our and Sudiksha’s story.”

The family thanked medical practitioners who “did their best for Sudiksha.”

“To those few clinicians who seemed only to care about Sudiksha dying, we forgive you,” they said. “We are a Christian family who believe in life, love, and forgiveness.”

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Thirumalesh’s family paid for their own attorneys before they secured assistance from the Christian Legal Centre, a legal group under the umbrella of the advocacy group Christian Concern.

Andrea Williams, the chief executive of the Christian Legal Centre, praised the woman’s family.

“This Christian family has shown courage in their most difficult hour facing the loss of their beloved Sudiksha. They stood firm in defending Sudiksha’s life,” she said in a statement Friday.

“This profoundly disturbing case has demonstrated the urgent need for an overhaul into how critical care decisions are made in the NHS and the courts. There is an urgent need for a more open and transparent system,” Williams continued. “We are concerned about how many other patients and families have been through similar ordeals and have had to suffer in silence.”

Williams said there has been “a series of disturbing and upsetting cases” on end-of-life issues and advocated a government inquiry into how the Court of Protection and the Family Division handles these cases.

Christian Concern is helping Thirumalesh’s family raise funds on its website.

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