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….