A courageous teenager who was locked in a legal battle with doctors who wanted to withdraw her life-preserving treatment has tragically died, but still can’t be named.
The 19-year-old woman, anonymised by the courts as ‘ST’, can’t be identified because of Draconian reporting rules which have shrouded her heartbreaking case in secrecy.
Her distraught family said on Thursday that even now, in their hour of grief, they continue to be gagged by the court order from saying her name aloud.
They vowed to continue fighting for justice for their fearless daughter to bring what’s been done in the dark into light.
The teenager, who had a rare degenerative condition, died after suffering a cardiac arrest on Tuesday, just days after speaking anonymously to a newspaper outlet about her ordeal from her hospital bed.
Extraordinarily, despite her death, the blanket rules which prohibit the media from identifying ‘ST’ or anything about her and her family or citing the hospital concerned, still stand.
Her devastated parents said that they’ve lost their beautiful and courageous daughter, known to the world as ‘ST’. But to them, she has a real name.
They added that to her family she was everything and that they would cherish and never forget the 19 years they had with her.
They said that the past year had been one of struggle, even torture, for ‘ST’ and her family at the hands of the hospital and the Courts of Protection.
Her family has vowed that her death isn’t 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 condition as that of baby Charlie Gard, whose life support was removed following a painful court battle over his treatment in 2017.
‘ST’ had lived a somewhat independent life before she was hospitalised last year after contracting COVID-19, which worsened her degenerative illness.
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.
Despite her difficulties, the outstanding straight-A student was determined to live long enough to travel to North America for potentially life-extending clinical trials of nucleoside therapy.
However, ‘ST’ was barred from fundraising for the £1.5 million costs because of the reporting restrictions requested by her hospital when it took her to court to remove her life-preserving treatment in April.
This young woman battled to the very end. She was such a courageous young lady, but this fight needs to continue so that others can’t be treated like this.
Shame on the courts, shame on the politicians, shame on the NHS. Hope her struggles will never be forgotten because the NHS is out of control. Who on earth gave them this much power?
The NHS used every means at their disposal, and no doubt a great deal of public money to prevent this young woman and her family from seeking treatment elsewhere, they must be so proud of themselves. Yes, this young lady was extremely sick, but the NHS are even sicker.
The United Kingdom is turning more and more into a dictatorship. I hate to think what this country will be like in say thirty years’ time, and what has this world come to when a dying teenager isn’t allowed to have the freedom to identify herself or speak freely?
I just don’t understand why the court still has a gagging order, now that this young lady is dead. The parents obviously want to speak openly about their daughter. At least the hospital should be named and shamed and the same goes for the judge who ordered the gagging order. This judge evidently had no understanding or belief in the freedom of speech of an individual.
THE MONTHLY MOSQUITO 