A brave teenager who was locked in a legal fight with doctors who wanted to withdraw her life-preserving treatment has tragically died – but still cannot be named.
The 19-year-old woman, anonymised by the courts as ‘ST’, cannot be identified because of Draconian reporting restrictions which have shrouded her heart-breaking case in secrecy.
Her distraught family said on Thursday: ‘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 continue fighting for justice for their courageous daughter to ‘bring what has been done in the dark into the light’.
The teenager, who had a rare degenerative condition, died after suffering a cardiac arrest on Tuesday, just days after speaking anonymously in The Daily Mail about her ordeal from her hospital bed.
Extraordinarily, despite her death, the blanket restrictions which ban the media from identifying ST or anything about her and her family or mentioning the hospital involved, still stand.
Her devastated parents said: ‘We lost our beautiful and courageous daughter, known to the world as ST. To us she has a real name.’
They added: ‘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.’
Her family has vowed that her death is ‘not the end’ and said they will continue to fight ‘for ST’s right to be identified and for her full story to be known’.
ST suffered from mitochondrial depletion syndrome, the same illness as that of baby Charlie Gard, whose life support was withdrawn following a bitter court battle over his treatment in 2017.
She had lived a relatively independent life before she was hospitalised last year after contracting Covid-19, which worsened her degenerative condition.
The previously outgoing teenager, who enjoyed watching Love Island and coffee with friends, was left reliant on a ventilator, a feeding tube and regular dialysis.