Teen with rare condition fights NHS Trust trying to withdraw vital care: 'I want to die trying to live'

NHS in London, England.
NHS in London, England. | Reuters/Toby Melville

A teenage girl with a rare genetic condition is fighting the government in the United Kingdom, which has asked the Court of Protection for permission to remove the treatment she needs to stay alive. 

The 19-year-old girl, referred to in court documents as ST, suffers from a rare genetic mitochondrial disease, which can affect how the body's cells produce energy. While ST requires consistent hospital attention due to chronic muscle weakness and kidney damage, she is conscious and capable of communicating. 

According to a Thursday statement from the Christian Legal Centre, an organization that offers legal support to people of faith, the National Health Service Trust has asked the Court of Protection to approve a "palliative care plan" for ST. The plan would involve stopping the dialysis treatment ST needs to survive and making no attempt to resuscitate her.

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The NHS is England's publicly funded healthcare system.

The trust's argument is that ST is "actively dying" due to her condition, and the courts should determine the future of her care. While ST would like to undergo treatments to sustain her life, including clinical trials of nucleoside therapy in Canada, the hospital doctors argued that the girl's inability to accept her death is a sign of "delusion." 

In a judgment released last week, Mrs. Justice Roberts acknowledged that the teenager showed an "overwhelming desire to live." However, the judge still ruled that the court should make decisions about the girl's treatment. 

"ST is unable to make a decision for herself in relation to her future medical treatment, including the proposed move to palliative care, because she does not believe the information she has been given by her doctors," the judge wrote. "Absent that belief, she cannot use or weigh that information as part of the process of making the decision."

Even though the teenager authorized her parents in November 2022 to make decisions on her behalf if she became too sick, the hospital asked the Court of Protection to set that authorization aside in February 2023. According to the hospital, ST did not have the mental capacity to sign the document granting her parents this power. 

The teenager's Christian parents have spent their life savings to hire attorneys to help them throughout the legal proceedings with the NHS. According to the girl's loved ones, ST is a "fighter" who was studying for her "A-Levels" (the equivalent to an Advanced Placement exam in the United States) before she contracted COVID-19 in August 2022. 

ST has told her doctors that she wants to do everything to extend her life, stating: "I want to die trying to live."

The parents want to raise the necessary funds to allow ST to participate in clinical trials in Canada they believe could sustain their daughter's life. The trials are expected to start in Canada later this year. 

Due to the court's March 2023 "Transparency Order," however, the parents are prohibited from reporting any information that could reveal their identities, as well as the names of ST and other family members. In April 2023, ST's parents made an urgent application to reconsider the order so they could raise the funds to pay for their daughter's treatment. The court has not had time to consider the application despite holding three hearings since the parents filed it.

"This has been a year of continuous torture for the family," ST's parents stated. "Not only are we anxious about our beloved daughter's fight for survival, but we have also been cruelly gagged from being able to speak about her situation."

"We are not allowed to ask people for prayers or for help, which she desperately needs," they continued. "It is a matter of life and death for our daughter to raise money for treatment in Canada, so these arbitrary reporting restrictions are literally killing her." 

The parents expressed disbelief at the judge's determination that their daughter cannot make decisions for herself, even though two psychiatric experts told the court that ST is not struggling with mental illness and is capable of decision-making. 

"We are very distressed by this injustice, and we hope that, by Jesus's grace, this will be corrected on appeal," the parents said. 

CLC Chief Executive Andrea Williams called the case "profoundly disturbing." She stated that the case demonstrates an "urgent need" to change how the NHS and the courts make "end-of-life decisions." 

"What can be more natural or rational for a seriously ill 19-year-old than to leave no stone unturned and to take every chance of survival?" Williams asked. "ST has wanted to tell her story to the world in order to try and access further treatment but has been prevented from doing so by the ironically named Court of Protection."

"We have been calling upon the government for some time now to urgently set up a public inquiry into the practices of the Court of Protection and the Family Division surrounding end-of-life cases after a series of disturbing and upsetting cases," she continued. 

The situation involving the 19-year-old girl resembles the case of Charlie Gard, a British baby with a rare genetic condition. In 2017, the 11-month-old child died following a lengthy legal dispute between his parents and doctors over whether the couple could take the baby to the United States for experimental treatment. 

The Great Ormond Street doctors said that seeking care in the United States would only prolong the baby's suffering, and the British courts, backed by the European Court of Human Rights, refused permission, saying the plan was not in the child's best interests. 

Archie Battersbee, a 12-year-old boy, died last August after the hospital withdrew his treatment. The boy suffered a "catastrophic hypoxic ischaemic brain injury." While his parents fought a lengthy legal battle to continue his care or move him to hospice, Battersbee's life support was eventually withdrawn.

Samantha Kamman is a reporter for The Christian Post. She can be reached at: Follow her on Twitter: @Samantha_Kamman

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