Family say 19-year-old who spoke out after bid to withdraw treatment has died
A woman who spoke out against NHS doctors after their bid to withdraw her lifesaving treatment has died, say reports.
The unnamed 19-year-old spent years in hospital surviving against the odds despite doctors telling her that she will die. Despite her death her name cannot be revealed, due to a restrictive court order she is known only as “ST”.
The NHS had bid to withdraw the treatment which counteracts her rare degenerative disorder. She had said the medical and legal establishment were working against her. For a year doctors told her she only has days left yet she continued to outlive their estimates and had done so since she was a child.
Now the Mail reports that the woman has died but that her name cannot be reported. Her distraught family said that they had been 'gagged by the court' and vowed to continue fighting for their daughter.
They said: "Even now, in the hour of our grief, we continue to be gagged by the court order from saying her name aloud." They vowed to fight for justice 'to bring what has been done in the dark into the light’.
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The woman, who had a rare degenerative condition, was said to have died after cardiac arrest on Tuesday just days after speaking anonymously about her plight. Blanket restrictions ban the media from identifying ST or anything about her and her family as well as mentioning the hospital.
Her parents told the outlet: "We lost our beautiful and courageous daughter, known to the world as ST. 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 at the hands of the hospital and the Court of Protection."
A judge last month ruled she lacked the mental capacity to make her own decisions or instruct her own lawyers. Doctors successfully argued her refusal to accept imminent death is a sign of “delusion” and that the Court of Protection should decide her fate. The judge said that because she did not believe what her doctors are telling her about the trajectory of her disease and her likely life expectancy she cannot choose between treatment options on an informed basis.
Her local authority had made her an offer to resume her A-levels from hospital. Her family said at the time: “We feel ST still has more years to live if the nucleoside treatment is given in time.” £1.5 million would need to be raised by the family to cover the costs of an air ambulance to either Canada or America, where three hospitals have offered to treat her, and the subsequent clinical trials.
But, ST said: “Because of the court proceedings I am blocked from going [to North America] and because of the gagging orders I cannot fundraise to finance my treatment and transport.”
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