Fighting the System to stay alive.
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
(LifeSiteNews) — In an interview published today, the 19 year old UK woman known only as ST has restated her determination to live.
‘They’ve done everything they can to stop me telling this story,” she told Britain’s Daily Mail, speaking from her bed in an intensive care unit.
“I have found myself trapped in a medical and legal system governed by a toxic paternalism which has condemned me for wanting to live.”
Owing to a reporting restriction (RRO) described by the Mail as “draconian,” neither the girl nor her family can be named in stories about her case, a legal battle to continue her life-supporting treatment as she fights against a rare mitochondrial disorder. As LifeSiteNews has reported, the NHS trust responsible for her care is seeking legal permission to remove this treatment, which includes kidney dialysis and mechanical ventilation.
ST, as the restrictions state she must be known, cited the judgement of the Court of Protection in her interview.
“Because I have refused to give up hope, my doctors say I cannot possibly have mental capacity to make decisions about my health,” she said.
“It seems if you disagree with the NHS you must, for that reason alone, be considered delusional.’”
ST’s doctors state she is “actively dying” – an assessment which began in September 2022 when her parents were told she had only days to live. ST’s mother said her daughter had been weakened by a COVID infection.
“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,” she said.
ST’s father told the Mail that that had been shocked by the physicians’ gloomy outlook.
“We were in shock when the doctors said she will die in this ITU [Intensive Therapy Unit],” he said. “But despite the treating team’s views, ST has outlived expectations and continues to prove the doctors wrong.”
Her doctors argued in a legal process which began in April 2023 that ST’s life supporting care should be “de-escalated,” leaving her to die.
As ST told the Daily Mail, “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.”
ST maintains she should be permitted to travel to Canada, where she believes she could take part in a trial for experimental nucleoside therapy.
This novel and unproven treatment could potentially correct her malfunctioning mitochondria. The family hopes that, although it does not offer a cure, the therapy could extend the young woman’s life.
“We feel ST still has more years to live if the nucleoside treatment is given in time,” her mother told the Mail.
It is this hope, described as a “shared belief” by Justice Roberts, that formed the grounds on which ST was judged to be mentally incapable of making decisions about her own healthcare – and therefore about her own life.
ST’s hope is supplied and supported by her Christian family, who have sacrificed to try to save ST. According to the Mail, they have already been forced to spend £25,000 in life savings and sell family heirlooms to fight the ongoing legal case.
Still, they are determined to continue.
“We cannot give up, especially after seeing the grit and determination from our daughter’s end for more than a year in ITU,” said her father. “No one, including the doctors, understand the complex nature of this disease.
ST told the Mail, “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.”
Despite two psychiatrists – known only as “Dr C” and “Dr D” – agreeing with Micheal Horne KC (acting for the Official Solicitor) that ST did not show any signs of mental impairment, Mrs. Justice Roberts ruled ST’s determination to live demonstrated mental incapacity. Roberts agreed with the assessment of the NHS Trust charged with her care that ST’s “apparent refusal or inability to accept that her disease will result in her early, if not imminent, death…” was, in fact, an “inability, or “delusion”…rendering her incapacitous to make decisions for herself.”
This ruling surprised and shocked people in Britain.
“When does disbelieving your doctor shade into incapacity?” asked Alex Ruck Keene, a UK legal expert in mental capacity.
Yet ST’s case is not limited to the question of the “lethal paternalism” displayed by the judgment of the Court of Protection, as it was described by Oxford-based bioethics Professor D.A. Jones.
The restrictions on ST and on reporting her case represent a further threat to her chance at life, being a serious impediment to the raising of an estimated £1.5 million needed to fund her nucleoside treatment.
“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,” she said.
According to the Mail , this figure covers the heavy costs of an air ambulance flight to North America, as well as the treatment itself, which three hospitals are said to have already offered.
“I am in a race against time to escape from this system and the certain death it wishes to impose on me,” the teenager said.
“But I am a fighter and will continue to fight. I trust in God and will not give up hope.”