A 19-year-old with a severe medical condition, her identity protected under the alias ST in legal documents, is currently engaged in a legal battle with the National Health Service (NHS) in the United Kingdom regarding the termination of her treatment in favor of end-of-life care.
ST, a former A-level student, is advocating for the opportunity to pursue experimental therapy in Canada, believing it holds the potential to address her rare genetic condition. Presently, her medical condition necessitates the use of a ventilator to facilitate breathing and sustenance through a feeding tube.
The ultimate decision regarding ST’s medical care will fall under the jurisdiction of the UK’s Court of Protection, which will determine whether NHS doctors should continue treating her.
ST’s medical condition closely resembles that of Charlie Gard, a baby who became the subject of a widely publicized legal case in 2017 when life support was withdrawn.
According to the consensus among the medical professionals attending to ST, her condition has progressed to an advanced stage, with the belief that she is either currently in, or rapidly approaching, the terminal phase due to her degenerative disease.
Despite the formidable physical challenges she faces, ST remains able to communicate with her medical team, often with the assistance of her mother and, occasionally, speech therapists.
In ST’s own words, “I want to die trying to live. We have to try everything.” However, the court has ruled that the decision regarding her treatment will not be made by her alone.
ST is determined to extend her life to undergo experimental nucleoside therapy abroad, although no facility currently offers this treatment to her, and there is no assurance of its efficacy.
In a hearing held this week, Mrs. Justice Roberts conveyed that the option of treatment in Canada is not immediately feasible, as the trial has been paused due to financial constraints. She further stated that the information presented by the family and the healthcare provider regarding potential treatment options in North America did not confirm ST’s eligibility.
