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A 19-year-old woman who is in a serious condition and her family are suing the National Health Service (NHS) over its plans to cease further treatment and instead begin providing end-of-life care.
The formerly advanced level student has expressed interest in receiving an experimental treatment in Canada. She believes that this treatment may assist her unusual genetic ailment.
She is dependent on a ventilator to help her breathe, and she is fed through a tube in her neck. The hospital describes her condition as "actively dying."
The decision on her future will be made by the Court of Protection in the UK.
At this hearing, it will be decided whether or not she will continue to get treatment from NHS doctors.
The adolescent, referred to as ST in court documents, has a mitochondrial disease similar to that of Charlie Gard, an infant whose life support was withdrawn in 2017 following a high-profile legal case.
ST has entered or is rapidly approaching the final stage of her existence due to her progressive disease, according to the consensus of the doctors treating her.
She is able to communicate with her physicians with the help of her mother and, on occasion, speech therapists despite her physical limitations. ST has stated that she desires to die attempting to survive as we must attempt everything. She desired to make her own decision, but the court has ruled that she cannot.
ST has the optimistic outlook that she will be able to continue living long enough to receive experimental nucleoside therapy treatment in another country, despite the fact that there is not yet a facility that can provide her with this treatment and there is no assurance that it will be beneficial.
As the case was being heard this week, Mrs. Justice Roberts stated that receiving treatment in Canada was "not an immediate option" due to the fact that the trial had been halted due to a lack of financing.
She added that none of the information provided by the family or trust regarding prospective treatment options in North America confirmed ST's eligibility.
ST is aware that she has spent nearly a year in an intensive care unit and that her life cannot be supported anywhere else in the United Kingdom.
She understands and accepts that she would need to be weaned off of ventilator support before she could reside outside of the unit, but she remains determined to make the attempt.
Instead of long-Covid or other infections, her current breathing difficulties are attributed to her deteriorating mitochondrial disease, which has weakened her musculature.
ST's Christian family asserts that they will continue to defend her case and have submitted a request to have existing reporting restrictions lifted so that they can raise funds for their daughter's treatment by publicizing her situation.
In a statement released through their attorney, the family expressed surprise at the judge's conclusion that their daughter lacks the capacity to make her own decisions, despite the consensus of experts to the contrary.
We are very distressed by this injustice, and we hope that, by Jesus's grace, this will be corrected on appeal."
