(LifeSiteNews) — A conscious 19-year-old denied life-saving treatment by a judge who considered her “delusional” for wanting to fight for her life has died. Her grieving family is still forced to adhere to strict reporting restrictions and the girl’s identity remains unknown.
The young British woman, known as “ST” due to court-enforced gag orders that prevent individuals involved in the case from being identified, died Tuesday in the U.K. after suffering cardiac arrest. Although she suffered her entire life from mitochondrial depletion syndrome — a rare genetic condition in which the energy-producing mitochondria are severely deficient in the body’s cells — the girl’s health had significantly deteriorated after contracting COVID-19 in August 2022.
For the last year of her life, ST was in the intensive care unit on a ventilator and dialysis, which a judge ruled could be removed by the hospital, citing unsubstantiated claims that the girl was unable to make her own medical decisions.
Despite the reality that the case surrounding ST’s end-of-life treatment has undoubtedly concluded after her tragic death, the reporting restrictions that allow courts to keep all information in cases related to the 2005 Mental Capacity Act private have not been lifted. The same restrictions prevented her from fundraising money to travel to the United States and Canada for experimental treatments in which she had expressed a desire to participate.
“We lost our beautiful and courageous daughter, known to the world as ST,” the girl’s parents told the Daily Mail. “To us she has a real name.”
“To her family, she was everything and we will cherish and never forget the 19 years we had with her. The past year, however, has been one of struggle, even torture, for ST and for her family and the hands of the hospital and the Court of Protection.”
“We were essentially given a choice: give up and let us prepare your daughter for death, or have your lives dismantled and torn apart if you wish to resist us,” the family continued. “We chose to give up everything for our daughter. Day after day in the intensive care ward we and ST had to exist in an environment that had given up on her right and wish to live.”
ST herself had told the outlet last week that “I do not want this and want to try the treatment being offered abroad,” which she described as “my only chance” even though “it might only be a small chance.”
The family added that the fight for their daughter’s “right to be identified and for her full story to be known” is one that they will continue even after her death. However, as noted by the Daily Mail, “they are now struggling to find the funds to pay off their debts and cover the costs of ST’s funeral.”
They were forced to pay legal fees on their own, sacrificing £25,000 in savings and “giving up their livelihoods” to never be separated from their daughter and sister. Recently, the Christian Legal Centre began supporting the family with the legal battle free of charge.
As previously reported by LifeSiteNews, ST was deemed unable “to accept the medical reality of her position” due to her hope that she might find lifesaving treatment beyond the U.K. on August 25. Mrs. Justice Roberts made the decision after the University Hospital Birmingham NHS Foundation Trust filed a case seeking authorization from the Court of Protection to stop life-saving treatment and shift to palliative care.
Medical professionals not in favor of supporting ST’s fight for her life described her hope and determination as a “delusion.”
Roberts argued that “her profound inability to contemplate the reality of her prognosis, and a fundamentally illogical or irrational refusal to contemplate an alternative are all likely to have contributed to impaired functioning … render[ing] her unable to make a decision for herself in relation to her future medical treatment.”
Although mental health professionals testified that the girl’s cognitive abilities were unaffected by her physical deterioration, the decision authorized the hospital to remove dialysis and avoid any attempts to resuscitate her.
Last week, British television star and politician Laurence Fox publicly criticized the ruling that sided with the National Health Service (NHS) trust, calling it “satanic insanity.”
“The silencing of the family’s freedom of speech to speak about the case is an even starker wrong,” he added, emphasizing that the judge’s decision was “the removal of the ultimate freedom — that of life.”
Anglican Reverend Calvin Robinson expressed similar sentiments, saying he was willing to break the reporting restrictions to be able to help the family. He told LifeSiteNews that “no human law can override natural law or divine law,” arguing that the restrictions are a form of “censorship.”
Robinson said earlier this week that, should ST contact him for assistance, he would have been willing to break the “immoral law” that was denying her not only crucial medical treatment but also financial and spiritual support.