“By the time you read this, I could be dead. That’s what my doctors say, who have repeatedly told me over the last year that I only have a few days to live. But I am a fighter and I will keep fighting.’
These are the devastating words of a seriously ill but inspiringly defiant 19-year-old girl who argues that she will be condemned to almost certain death if NHS doctors manage to withdraw her life-sustaining treatment.
As she painstakingly dictates her thoughts to me from an intensive care unit, it becomes clear that her will is completely unaffected by the many obstacles she faces in her fight for survival.
Because she is now fighting not only against her extremely rare degenerative disease, but also against the medical and legal establishment that she believes is being used against her.
Despite the enormous importance of her case, the Mail cannot even give you her first name, details of her family or the hospital where she is being treated.
Instead, her identity was reduced to the initials “ST” by a draconian court order that prevented her from providing her name on her heartbreaking account.
The 19-year-old suffers from the rare degenerative disease and is in a notable legal battle with an NHS trust over her care (Image: Archive image)
The girl’s condition is the same as that of Charlie Gard, the 11-month-old child whose life support was withdrawn following a bitter court battle over his treatment (Charlie’s mother is pictured with his younger brother Oliver).
“They did everything they could to stop me telling this story,” says the brave teenager about her remarkable legal battle with the NHS trust that tried to place her in palliative care.
“I was trapped in a medical and legal system dominated by a toxic paternalism that condemned me for wanting to live.” Determined to expose her ordeal, she, along with her parents and brother – anonymously for the time being – attended exclusively spoken to the mail.
She tells me how her condition – mitochondrial depletion syndrome (MDS), a genetic disorder that limits the function of the body’s cells – worsened with a Covid attack in August last year, leading to her being hospitalized.
“I had a tracheostomy made, which makes it difficult for me to speak, but as I lie here in my hospital bed, I managed to dictate this message,” she says of her family, who acted as intermediaries for our “interview.” acts.
The tracheostomy (an opening in the front of the neck through which a breathing tube can be inserted) means she can only speak in short bursts. Other communication occurs through notes she writes herself and through the use of a device called Smartbox, which is similar in appearance to an iPad and helps people with speech impairments.
She strongly insists that while her MDS has caused kidney damage, muscle weakness and hearing loss, it has not affected her brain. She hopes to be able to get her high school diploma again soon.
And despite her ailments – she relies on regular dialysis, is fed through a tube and is tied to a ventilator that makes it easier for her to breathe – like any teenager, she still enjoys watching “Love Island”, messaging friends on Instagram, and scrolling through social media and plays board games.
Her doctors argue that she is “actively dying,” but the teenager says she has outlived all her prognosis and should be allowed to travel to Canada to take part in clinical trials for nucleoside therapy.
This experimental treatment would aim to restore mitochondrial function, and while it wouldn’t cure her, her family hopes it could potentially extend her lifespan. “My doctors say that because they can’t treat my MDS, I shouldn’t receive any further life-sustaining treatment.”
“Instead I should be stuffed with opioids so I pass out and die.”
The heartbreaking image of baby Charlie Gard in the womb, whose story captured global attention in 2017
“I don’t want this and I want to try the treatment offered abroad.” “It may be a small chance, but it’s my only chance,” says the desperate teenager.
Certainly few will be unmoved by their plight. And many will no doubt be deeply concerned about the troubling ethical questions her story raises about the power that doctors and lawyers have wielded over a clear-headed young woman who so desperately wants to live – and who insists she is in no serious pain .
But there’s something else that makes her story even more relevant: ST suffers from the same illness as baby Charlie Gard, whose life support was taken off in 2017 after a bitter court battle that drew global attention.
Just as in the case of Baby Charlie, ST faces the very institution whose job it is to protect her health. The difference between them is that while they both have the same extremely rare mutation in a gene called RRM2B, the onset of their symptoms is different.
Charlie’s illness was diagnosed much earlier than hers, which only became noticeable when she lost her hearing at the age of four. It then took almost a decade for it to become fully visible.
And of course, while Charlie and other babies in similar cases have been voiceless at the end of life, as an adult ST is all too capable of expressing her unrelenting desire to live.
Her mother says: “ST has been following Charlie Gard’s case closely because it matches her exact condition.”
“As a young, brave and loud teenager, she believes she is fighting not only for herself but also for people like Charlie Gard.” She believes he could have been saved with nucleoside treatment [to him] In the right time.’
Adding to the painful emotions surrounding ST’s story is the fact that she is the kind of daughter any parent would dream of: kind, considerate, smart, and devoted to her close-knit Christian family. Her parents paint a picture of a vibrant, adventurous girl who excelled at everything she tried.
Until a few years ago, she loved being outside, played countless sports, enjoyed trekking in nature and spent nights camping with friends under the stars.
In her early years, ST’s parents had little reason to believe that their daughter was anything other than perfectly healthy.
When she was born in 2004, weighing just over 3kg and with a lush head of hair, her parents – who already had a son – said their family was complete.
“We were very happy when we first found out we were expecting a girl,” remembers her mother. “She is very special and precious to us.” “I was overjoyed when I held her in my arms for the first time, she was beautiful.” But when ST was in kindergarten, the first signs that something was wrong appeared – her hearing began to fade and her eyelids drooped.
Charlie was treated for the same rare degenerative disease at Great Ormond Street Hospital in London
“A teacher had concerns and we were told to check her hearing,” her mother remembers.
Doctors confirmed that she was suffering from progressive hearing loss, but were unable to pinpoint the cause.
“We were only told that her hearing was deteriorating, nothing more.” Except for her hearing loss and her drooping eyelids [a condition known as ptosis]“Her general health was fine,” her father said.
ST received cochlear implants, which allowed her to hear clearly, as well as corrective surgery on her eyelids – and she remained happily in mainstream education.
She was successful in everything she tried – be it joining clubs, playing sports or studying at school.
Her brother recalls: “She loved physical education classes, including events like sports day. “She would always win the egg and spoon race.” She started showing signs of fatigue early in high school.
This eventually forced her to give up her sport and her parents began to believe something more serious was at play.
“She would get really tired.” [so] “We took her for a muscle biopsy,” her father said.
A series of tests followed, but it would be another three years before the family was finally told she had mitochondrial DNA depletion syndrome.
“We found that there are fewer than 15 reported cases in the entire medical literature, making it extremely rare,” her father said.
Despite the devastating setback, the bright teenager achieved excellent GCSE results the following year, achieving grade 7 (roughly equivalent to the old A grade) in almost all subjects.
She began her first year of high school with the hope of going to university. Her future seemed bright. Unfortunately, however, kidney problems developed, which led to her abandoning her studies and having to undergo regular outpatient dialysis in the hospital. However, her family says she was still able to enjoy her independence and often went for coffee with friends at the local Costa.
Then, in August last year, ST came down with Covid. Her health deteriorated rapidly, disrupting the life of the entire family.
Her parents gave up their family business to focus on her care and helping her communicate with doctors.
Then, devastatingly, the following month, in September 2022, they were told she had just days to live – her end, doctors say, apparently hastened by the severe bout of Covid she had suffered.
“She was told she was going to die soon. “Her treating doctors encouraged palliative care as she battled Covid-19, but she fought back successfully and recovered,” her mother said.
“We were shocked when the doctors said she would die in this ITU. “But despite the treatment team’s views, ST has exceeded expectations and continues to prove the doctors wrong,” her father added.
Her doctors say that given her deteriorating condition, the “kindest thing to do” would be to “relieve pressure on the intensive care unit” and make her as comfortable as possible.
Of course, ST is devastated by her prognosis, her family says, but assures them that she is “a fighter and no one can predict her death.”
According to ST, the hospital first took legal action in April this year after she “stubbornly refused to die” despite being repeatedly told she had just days to live.
“They took me to court to take away life-sustaining treatment and issue a gag order prohibiting me from speaking.” [publicly] “They inform us about the existence of a lawsuit or mention the hospital involved,” she adds. But despite her all-too-obvious powers of persuasion, a judge ruled last month that she lacked the mental capacity to make her own decisions or even hire her own lawyers.
The doctors successfully argued that her refusal to accept impending death was a sign of “delusion” and that the court of protection should decide her fate.
The 19-year-old was hospitalized last year after contracting Covid-19, which aggravated her degenerative condition
The judge agreed that she could not choose between treatment options “on an informed basis” because she “does not believe what her doctors are telling her about the course of her disease and her expected life expectancy.”
ST said it would appeal, saying the verdict came despite two court-appointed psychiatrists agreeing she had no evidence of mental impairment and could make decisions on her own.
“Because I have refused to give up hope, my doctors say I have no possible mental capacity to make decisions about my health,” she adds.
“If you don’t agree with the NHS, you obviously have to assume you’re crazy for that reason alone.”
Despite her ordeal, the caring teenager is still thinking of others in need – she recently donated her long hair to the Little Princess Trust, which makes wigs for sick children suffering from hair loss.
And despite all her setbacks, she is full of hope that one day she will be able to lead a fulfilling life outside the hospital walls.
According to her family, her local authority has offered her the opportunity to continue her A-levels from hospital, which she is currently pursuing. Her long-held dream of getting a degree to work in healthcare so she can help people like herself is still very much alive.
Her family remains behind her, believing that her unwavering spirit should at least give her the right to explore all available options.
“We believe ST has more years to live if nucleoside treatment is timely,” added her devoted mother.
Around £1.5million would need to be raised by the family – the NHS would not have to foot the bill – to cover the cost of an ambulance flight to Canada or America, where three hospitals have offered their treatment, and subsequent clinical trials.
But, says ST, “I’m prevented from going because of the court case.” [to North America] and due to the gag order, I am unable to raise funds to pay for my treatment and transportation.”
Her family have already been forced to spend £25,000 in savings and sell family heirlooms to combat the ongoing legal battle.
“We cannot give up, especially after seeing the courage and determination with which our daughter died in ITU for more than a year,” says her father, adding: “Nobody, including the doctors, understands her complex nature of this disease.”
Whatever her fate, ST says “the system urgently needs to be changed” so that no one else ever has to go through what she and her family have experienced over the past year.
She insists she won’t give up. “I’m in a race against time to escape this system and the certain death it’s trying to force me on,” she tells me, before vowing, “But I’m a fighter and I’ll keep fighting.” trust in God and will not give up hope.’