‘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.
‘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.
Hellbound and Down 