‘By the time you read this, I could be dead. That’s according to my doctors who, for the last year, have repeatedly told me that I have had only days to live. But I am a fighter and will continue to fight.’
These are the devastating words of a seriously ill — yet inspiringly defiant — 19-year-old girl who argues that she will be condemned to almost certain death if NHS doctors are successful in their bid to withdraw her life-preserving treatment.
Painstakingly dictating her thoughts to me from an intensive care unit, it’s clear her will is utterly undimmed by the many obstacles she faces in her battle for survival.
For she is now not just fighting her extremely rare degenerative disorder, but also the medical and legal establishment, which she feels has marshalled against her.
Despite the profound importance of her case, the Mail cannot even tell you her first name, nor any details of her family, nor the hospital that treats her.
Instead, her identity has been reduced to the initials ‘ST’ by a draconian court order preventing her from putting her name to her heartbreaking account.
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The girl’s condition is the same as that of Charlie Gard, the 11-month-old whose life support was withdrawn following a bitter court battle over his treatment (pictured is Charlie’s mother with his younger brother Oliver)
‘They’ve done everything they can to stop me telling this story,’ says the brave teenager of her remarkable legal battle with the NHS Trust which has tried to place her in palliative care.
‘I have found myself trapped in a medical and legal system governed by a toxic paternalism which has condemned me for wanting to live.’ Determined to expose her ordeal she has, together with her parents and brother, spoken — anonymously for now — exclusively to the Mail.
She tells me how her condition — mitochondrial depletion syndrome (MDS), a genetic disorder which limits the functioning of the body’s cells — was made worse by a bout of Covid in August last year, resulting in her being hospitalised.
‘I was given a tracheostomy, which makes it hard for me to speak, but lying here in my hospital bed, I’ve managed to dictate this message,’ she says via her family who act as conduits for our ‘interview’.
The tracheostomy (an opening made at the front of the neck so a breathing tube can be inserted), permits her to speak only in short bursts. Other communication comes by notes she writes herself, and the use of a gadget called a Smartbox, similar to an iPad in appearance, which helps those with limited speech.
Vitally, she insists that while her MDS has caused kidney damage, muscle weakening and a loss of hearing, it has not affected her brain. She’s hoping to return to her A-level studies soon.
And despite her ailments — she relies on regular dialysis, is fed by a tube and is bound to a ventilator that helps her breathe — like any teenager she still enjoys watching Love Island, messaging friends on Instagram, scrolling through social media and playing board games.
Her doctors argue she is ‘actively dying’, but the teenager says she has outlived all their prognoses and should be allowed to travel to Canada to join clinical trials for nucleoside therapy.
This experimental treatment would aim to ‘restore’ the functioning of the mitochondria and, while it would not cure her, her family hope that it could potentially extend her lifespan. ‘My doctors are saying because they cannot treat my MDS, I should not be having any more life-preserving treatment.
‘Instead I should be filled up with opioids so I will lose consciousness and die.
The heartbreaking image of baby Charlie Gard in the womb, whose story captured the world’s attention 2017
‘I do not want this and want to try the treatment being offered abroad. It might be a small chance, but it is my only chance,’ the desperate teenager says.
Few, surely, will fail to be moved by her plight. And many will, undoubtedly, find themselves deeply concerned by the troubling ethical questions her story raises about the power doctors and lawyers have wielded over a lucid young woman who so desperately wants to live — and who insists she is in no serious pain.
But there’s something else which makes her story even more pertinent: ST suffers from the same illness as baby Charlie Gard, whose life support was withdrawn in 2017, following a bitter court battle which captured the world’s attention.
Just as in baby Charlie’s case, ST has been pitted against the very institution assigned to safeguard her health. The difference between them is that, while both have the same highly rare mutation in a gene known as RRM2B, the onset of their symptoms has varied.
Charlie’s illness was diagnosed much earlier than hers, which only began to exhibit itself when she lost her hearing at the age of four. It then took nearly a decade to become fully apparent.
And, of course, whereas Charlie and other babies in similar end-of-life cases were voiceless, ST, as an adult, is all too able to communicate her unyielding desire to live.
Her mother says: ‘ST closely followed the case of Charlie Gard because it resonates with her exact condition.
‘As a young, brave and vocal teenager, she believes she’s fighting for not just herself, but people like Charlie Gard. She believes he could have been saved if nucleoside treatment was given [to him] at the right time.’
Adding to the painful emotions surrounding ST’s story is the fact she’s the kind of daughter any parent would dream of: kind, considerate, clever, devoted to her tight-knit Christian family. Her parents paint a picture of a vivacious, adventurous girl who excelled at everything she tried.
Until only a few years ago she loved being outdoors, played endless sport, enjoyed trekking in nature and spent nights under the stars camping with friends.
During her early years, ST’s parents had little reason to suspect their daughter was anything but perfectly healthy.
When she was born in 2004 weighing just over 7 lbs with a bountiful head of hair, her parents — who already had a son —– said their family was complete.
‘We were extremely happy when we first found out we were expecting a girl,’ her mother remembers. ‘She is very special and precious to us. I was over the moon when I held her for the first time, she was gorgeous.’ But when ST was at nursery the first signs something was amiss began to emerge — her hearing began to fail and her eyelids drooped.
Charlie was being treated for the same rare degenerative condition at Great Ormond Street hospital in London
‘A teacher had concerns and we were told to check her hearing,’ her mother recalled.
Doctors confirmed she was facing progressive hearing loss, but were unable to pinpoint the cause.
‘We were just told her hearing was deteriorating, nothing more. Except for her hearing loss and drooping eyelids [a condition known as ptosis], her overall health was fine,’ her father said.
ST had cochlear implants which enabled her to hear clearly, as well as corrective surgery on her eyelids — and she happily remained in mainstream education.
She thrived in everything she tried — whether it was joining clubs, playing sport or in her lessons at school.
Her brother recalls: ‘She loved PE lessons, including events like sports day. She would always win the egg-and-spoon race.’ It was early on in secondary school when she began to show signs of fatigue.
Eventually, this forced her to give up her sports and her parents started to believe there was something more serious at play.
‘She would get really tired [so] we took her for a muscle biopsy test,’ her father said.
A series of examinations followed, but it would be three more years before the family were finally told she had mitochondrial DNA depletion syndrome.
‘We gathered there are less than 15 reported cases in the entire medical literature, making it extremely rare,’ said her father.
Despite the devastating blow, the bright teenager achieved excellent GCSE results the following year, gaining grade 7s (roughly equivalent to the old grade As) in nearly all of her subjects.
She started her first year of A-levels in the hope of going to university. Her future seemed bright. Sadly, however, problems developed with her kidneys which meant she had to discontinue her studies, and receive regular dialysis at a hospital as an outpatient. Yet her family say she was still able to enjoy her independence, and would often pop out for a coffee in the local Costa with friends.
Then, in August last year, ST contracted Covid. Her health rapidly deteriorated, causing all the family’s lives to unravel.
Her parents abandoned their family business to focus on her care and help her communicate with doctors.
Then, devastatingly, the following month, in September 2022, they were told she only had days to live — her end, doctors say, apparently hastened by the bad bout of Covid she had suffered.
‘She was told she would die soon. Her treating doctors were promoting palliative care when she was battling Covid-19 but she successfully put up a fight and recovered,’ her mother said.
‘We were in shock when the doctors said she will die in this ITU. But despite the treating team’s views, ST has outlived expectations and continues to prove the doctors wrong,’ her father added.
Her doctors say that, given her deteriorating condition, the ‘kindest’ thing would be to ‘de-escalate the intensive care’ and make her as comfortable as possible.
Naturally, say her family, ST has been devastated by her prognosis but reassures them she ‘is a fighter and no one can predict her death’.
ST says the hospital first took legal action in April this year after she ‘stubbornly refused to die’ despite repeatedly being told she had just days to live.
‘They took me to court to remove my life-sustaining treatment and to impose a gagging order making it illegal for me to talk [publicly] about the existence of court proceedings or mention the hospital involved,’ she adds. But despite her all-too apparent cogency, a judge last month ruled she lacks the mental capacity to make her own decisions or even 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 19-year-old was hospitalised last year after contracting Covid-19 which worsened her degenerative condition
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 cannot choose between treatment options, ‘on an informed basis’.
ST has vowed to appeal, saying the ruling was made despite two court-appointed psychiatrists agreeing she has no signs of mental impairment and can make choices for herself.
‘Because I have refused to give up hope, my doctors say I cannot possibly have mental capacity to make decisions about my health,’ she adds.
‘It seems if you disagree with the NHS you must, for that reason alone, be considered delusional.’
Despite her ordeal, the caring teenager still thinks of others in need — she recently donated her long hair to the Little Princess Trust, which make wigs for sick children affected by hair loss.
And even after all her setbacks, she is full of hope that one day she may have a fulfilling life beyond the walls of the hospital.
Her local authority has made her an offer to resume her A-levels from hospital, say her family, which she is in the process of taking up. A long-held dream of obtaining a degree to work in healthcare, so that she can help people like herself, remains very much alive.
Her family continue to rally behind her, believing her unwavering spirit should, at the very least, grant her the right to explore all available options.
‘We feel ST still has more years to live if the nucleoside treatment is given in time,’ her devoted mother added.
Some £1.5 million would need to be raised by the family — the NHS would not have to foot the bill — 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, says ST, ‘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’.
Her family have already been forced to spend £25,000 in life savings and sell family heirlooms to fight the ongoing legal case.
‘We cannot give up, especially after seeing the grit and determination from our daughter’s end for more than a year in ITU,’ her father says, adding: ‘No one, including the doctors, understand the complex nature of this disease.’
Whatever her fate, ST says the ‘system urgently needs to change’ so no one else will ever have to go through what she and her family have in the past year.
She insists she will not give up. ‘I am in a race against time to escape from this system and the certain death it wishes to impose on me,’ she tells me, before vowing: ‘But I am a fighter and will continue to fight. I trust in God and will not give up hope.’
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