UK (Parliament Politic Magazine) – A 19-year-old in critical condition, along with her family, is engaged in a legal battle with the NHS over the decision to cease further treatment and initiate end-of-life care.
This former A-level student aspires to undergo experimental therapy in Canada, which she believes might offer a chance to address her rare genetic condition.
However, the hospital contends that she is in an “actively dying” state, reliant on a ventilator for breathing assistance and tube-fed. The UK’s Court of Protection will ultimately determine her fate.
The Trust’s Proposal for Palliative Care
An upcoming hearing will determine whether NHS physicians will continue treatment. In legal documents, the teenager is referred to as ST and has a mitochondrial disease, akin to the case of Charlie Gard in 2017, whose life support was withdrawn after a high-profile legal battle.
The medical consensus among her doctors is that ST is either already in or rapidly approaching the final stages of her life due to the progressive nature of her disease. Despite her significant physical challenges, ST can communicate with her healthcare providers with the help of her mother and, occasionally, speech therapists.
ST has expressed her desire to “fight for life,” but the court has ruled that she cannot make that decision for herself. She believes that she can prolong her life sufficiently to pursue experimental nucleoside therapy abroad, despite the absence of a treatment center offering it to her and no guarantee of its efficacy.
Exploring Clinical Trials for Nucleoside Therapy
During this week’s hearing, Mrs. Justice Roberts stated that the Canadian treatment was “not an immediate option” due to a pause in the trial resulting from funding limitations. She added that none of the information provided by the family or the trust regarding potential treatment options in North America confirms ST’s eligibility.
ST is aware that she has spent almost a year in an intensive treatment facility, with no option for her to receive life support outside an intensive care unit (ITU) in the UK. She acknowledges and accepts that she would need to be weaned off ventilatory support before she could live outside the ITU, and this remains her goal.
Doctors assert that her current breathing difficulties are attributed to the progressive weakening of her muscles due to her deteriorating mitochondrial disease rather than any long-Covid or other infections she may have contracted.
The Family’s Determination to Extend Her Life
ST’s Christian family intends to continue fighting her case and has applied to lift existing reporting restrictions to raise awareness of their daughter’s situation and gather funds for her treatment.
In a statement issued through their solicitor, the family expressed their shock and distress at the judge’s decision regarding ST’s capacity to make decisions for herself, despite expert opinions to the contrary, and expressed hope for a correction on appeal.
The teenager, known as a resilient individual by those familiar with her, was pursuing her A-level studies when her health began to deteriorate following her contraction of Covid in August last year.
Over the past year, she has been in intensive care, receiving regular dialysis treatment, nourished through a gastrostomy tube, and relying on a ventilator for breathing.
The medical trust’s proposal is to transition her to palliative care, wherein dialysis would be discontinued, and resuscitation efforts would not be pursued if necessary.
However, the teenager and her family are determined to explore every avenue to prolong her life, including participation in clinical trials for nucleoside therapy. They explain that her condition leads to muscle weakness, hearing loss, and kidney damage, necessitating dialysis and intensive care, but it does not impact her cognitive function.
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What Is Mitochondrial Disease?
Mitochondrial disease refers to a group of disorders, some of which are congenital, while others can manifest later in life, typically in young adults. Mitochondria are the cellular powerhouses responsible for supplying energy for all metabolic functions within the body.
Various individuals may have different genetic underpinnings for this condition, but they all share a common trait: mitochondria’s inability to produce an adequate amount of energy.
This deficiency leads to severe physical, developmental, and cognitive impairments.Mitochondrial disease can affect various body systems, especially those with high energy demands, such as the brain, heart, and liver. Regrettably, this ailment is progressive and currently lacks a cure.