EXCLUSIVE: My doctors insist it's time I died – but I will fight them
EXCLUSIVE My doctors insist it’s time I died – but I will fight them: Extraordinary case of 19-year-old woman suffering from Charlie Gard condition battling medics’ attempts to ‘condemn her to death’
- The 19-year-old says she is in a ‘race against time’ to join clinical therapy trials
- She was hospitalised last year with Covid-19 which worsened her condition
A seriously ill teenage girl has vowed to ‘fight’ NHS doctors who she says wish to ‘impose certain death’ on her by withdrawing her life-preserving treatment.
The 19-year-old suffers from the rare degenerative condition mitochondrial depletion syndrome and is locked in a remarkable legal battle with an NHS Trust over her care.
Speaking exclusively to the Mail from her hospital bed, she says she is in a ‘race against time’ to join clinical trials for nucleoside therapy in North America which could potentially extend her life.
But doctors have taken her to court claiming she is ‘actively dying’ and should be placed in palliative care.
The resilient young woman has been anonymised to the initials ‘ST’ by the courts which forbid her from even putting her name to her heart-breaking story.
The 19-year-old suffers from the rare degenerative condition and is locked in a remarkable legal battle with an NHS trust over her care (Pictured: Stock image)
The girl’s condition is the same as that of Charlie Gard, the 11-month-old whose life support was withdrawn following a bitter court battle over his treatment (Charlie pictured with his bereaved mother Connie Yates)
The draconian reporting restrictions mean the Mail is unable to print anything about her, the identities of her family or mention the hospital involved in the extraordinary legal battle.
She was hospitalised last year after contracting Covid-19 which worsened her degenerative condition, leaving her reliant on a ventilator and needing regular dialysis.
Painstakingly dictating her words via a speaking valve, the teenager said: ‘My doctors are saying that because they cannot treat my MDS [mitochondrial depletion syndrome] I should not be having any more life-preserving treatment.
‘Instead I should be filled up with opioids so that I will lose consciousness and die.
‘I do not want this and want to try the treatment being offered abroad. It might only be a small chance but it is my only chance.
‘Because I have refused to give up hope, my doctors have said that I cannot possibly have mental capacity to make decisions about my health.’
Her family say the blanket restrictions mean that they are unable to fundraise for the £1.5million needed to take the straight A student to Canada for the potentially life extending therapy.
The tight-knit Christian family is hoping to challenge the court order so that ST is ‘able to tell her story to the world’.
‘She feels that her condition is very complex and unique, hence she requires the publicity and wants her identity to be revealed including the location of her ITU so that people from nooks and corners of the world can come forward to help her,’ they said.
The girl’s condition is the same as that of Charlie Gard, the 11-month-old whose life support was withdrawn following a bitter court battle over his treatment, capturing the world’s attention in 2017.
His bereaved mother, Connie Yates, has been trying to support the family via Zoom meetings – with the camera turned off during the calls for fear of breaching the legal restrictions placed upon them.
The heartbreaking image of baby Charlie Gard in the womb, whose story captured the world’s attention 2017
‘It breaks my heart that it has been six years since Charlie died and nothing has changed,’ Ms Yates said.
‘We’ve been campaigning for Charlie’s Law [to see health rules amended to protect parental rights in such cases] all this time yet another family is still going through this.’
She said the stricken teenager has the exact same rare condition as baby Charlie and needs the same nucleoside therapy, available in the US and Canada, she had been fighting to get her son.
‘The treatment is non-invasive, it is simply a powder which is dissolved in water, and it will produce something healthy people produce naturally,’ Ms Yates continued. ‘What family would not want to give it a go in order to give their child a chance?
‘It has been quite hard seeing that this happening again … But I feel very passionate about it, it’s important that she gets the treatment she needs to save and improve her life.
Charlie was being treated for the same rare degenerative condition at Great Ormond Street hospital in London
‘I can’t change what happened to my family. I will always have to live with that what if? What if Charlie had the treatment. I don’t want another family to go through that.’
ST’s case is particularly unique when compared to other end-of-life cases involving children such as Charlie – because she is an adult, is conscious and able to communicate her unwavering will to live.
Yet a judge last month ruled that the teenager lacks the mental capacity to make her own decisions or even instruct her own lawyers.
Hospital doctors say that the ‘kindest’ option given her deteriorating condition is to ‘de-escalate the intensive care and make her comfortable’. They successfully argued that her refusal to accept imminent death is a sign of ‘delusion’ and that the Court of Protection should decide her fate at a hearing yet to be held.
The judge agreed that, because ‘she does not believe what her doctors are telling her about the trajectory of her disease and her likely life expectancy’ she was unable to weigh her treatment options ‘on an informed basis’.
The 19-year-old was hospitalised last year after contracting Covid-19 which worsened her degenerative condition
But the teenager and her family say that while her condition causes muscle weakness, loss of hearing and kidney damage, it has not affected her brain.
The ruling was made despite two court-appointed psychiatrists agreeing that the young woman, who wishes to continue with her studies from hospital, has no signs of mental impairment.
The remarkable teenager, who enjoyed trekking, camping and netball before her health deteriorated, vowed to appeal against the judgment, and tells the Mail that she refuses to give up.
‘I have found myself trapped in a medical and legal system governed by a toxic paternalism which has condemned me for wanting to live,’ she said via her family.
‘But I am a fighter and will continue to fight.’
The Christian Legal Centre, which is supporting the family, said the courts had ‘dehumanised’ the intelligent teen by anonymising her against her wishes.
Its chief executive, Andrea Williams, said: ‘This profoundly disturbing case … demonstrates the need for a more open and transparent system. Justice is done in the light and not behind closed doors.
‘What can be more natural or rational for a seriously ill 19-year-old than to leave no stone unturned and to take every chance of survival?
‘A truly compassionate and civilized society protects the most vulnerable, it does not dehumanize and devalue a young woman who is fighting for her life and wants to live.
‘ST has wanted to tell her story to the world to try to access further treatment but has been prevented from doing so by the ironically named Court of Protection.’
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