UPDATE: Sudiksha Thirumalesh (19) tragically passed away on September 12.
Sudiksha, a committed Christian, had said she wanted to “die trying to live” but the restrictions placed on her and her family by a Court of Protection order barred them from raising funds to travel to Canada to join a clinical trial of cutting-edge nucleoside treatment.
A judgment from Mrs. Justice Roberts in the weeks before her death disturbingly said that Sudiksha did not have capacity to make such decisions after the NHS lawyers argued she was “delusional” for disagreeing with the hospital’s view that her condition was hopeless and she had to be put on an end of life pathway.
The ruling was made despite two psychiatrists providing evidence to the contrary.
“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 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.”
May God rest her soul.
A UK hospital is withdrawing life-sustaining care from a 19-year-old girl who wants to be treated abroad.
Please URGE the National Health Service (NHS) to defend the right to life of this teenager, and the courts to lift the draconian reporting restrictions that are preventing the family from seeking the help they need.
SIGN: Hospitals and courts must not be allowed to kill the sick
The UK's Court of Protection has already given permission for the hospital to remove dialysis and lifted any requirement to resuscitate the teenager, as was necessary in May and July, effectively giving the girl only weeks or months to live.
Now the family are in a race against time to lift court-imposed reporting restrictions so that they can fundraise for their daughter's treatment abroad.
Our petition will be sent to both the NHS and the High Court Family Division in order to pressure them into providing life-saving care and lifting the existing reporting restrictions respectively.
Lawyers for the hospital claimed in court that the young woman’s desire to continue fighting to live was a “delusion” leaving her unfit to make choices about end-of-life medical care, despite two psychiatric experts testifying that she is of sound mind.
Mrs. Justice Roberts nonetheless found in the hospital's favor, writing in her August 25 judgement that “ST’s complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information, I likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain.”
“Whilst she has been sustained by the near continuous presence of her mother and, to a lesser extent, the other members of her close family, she has endured almost a year of intensive medical and surgical intervention which has been both painful and distressing for her,” the judge argued. “She is frightened by the prospect of dying and clings to her desire to survive what her doctors have repeatedly told her is an unsurvivable condition.”
Roberts added 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.”
SIGN: The hospital and courts have no right to kill ST
The patient, a 19-year-old anonymously referred to as ST in the legal proceedings, suffers from mitochondrial depletion syndrome, a rare genetic condition in which the energy-producing mitochondria are severely deficient in the body’s cells.
Though the terminal illness has left her reliant upon dialysis, a feeding tube and a ventilator due to kidney damage, hearing loss and muscle weakness, the condition has not affected ST’s brain function.
ST remains determined to do all she can to live as long as possible, including participating in experimental treatments in Canada. Knowing the reality of her prognosis, the young woman still told a doctor, “This is my wish. I want to die trying to live. We have to try everything.”
SIGN: Let ST get treatment abroad - the hospital and courts have no right to kill her
“This has been a year of continuous torture for the family,” ST’s family said in a statement shared by their legal team. “Not only are we anxious about our beloved daughter’s fight for survival, but we have also been cruelly gagged from being able to speak about her situation.”
Nobody involved in the case can be named at present, and the girl’s family expressed frustration that they are being “cruelly gagged from being able to speak about her situation.” They added that “these arbitrary reporting restrictions are literally killing her” because they are unable to raise money for the experimental Canadian treatment.
Dying UK teen needs reporting restrictions lifted to seek help in Canada, America - LifeSiteNews
Oxford bioethicist rebukes ruling against dying UK teen’s ability to choose life-supporting treatment - LifeSiteNews