‘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 only days to live. But I am a fighter and will continue to fight.’
These are the devastating words of a very sick, yet inspiringly rebellious 19-year-old girl who claims that she will be sentenced to almost certain death if NHS doctors are victorious in their bid to withdraw her life-preserving treatment.
Painstakingly dictating her thoughts from an intensive care unit, it’s evident her will is utterly undimmed by the numerous obstacles she encounters in her fight for survival.
For she is now not just battling her incredibly rare degenerative disorder, but also the medical and legal establishment, which she feels has marshalled against her.
Despite the deep importance of her case, a newspaper outlet can’t even tell you her first name, any details of her family, or the hospital that treats her.
Instead, her identity has been reduced to the initials ‘ST’ by a draconian court order stopping her from putting her name to her heartbreaking account.
‘They’ve done everything they can to stop me telling this story,’ says the spirited teenager of her extraordinary legal battle with the NHS Trust which has attempted to put 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 tell her ordeal she has, together with her parents and brother, spoken — anonymously for now — exclusively to a newspaper outlet.
She said that 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.
She said via her family who act as conduits for the interview that she was given a tracheostomy, which makes it difficult for her to speak, but lying in her hospital bed, she managed to dictate a message.
The tracheostomy is an opening made at the front of the neck so a breathing tube can be inserted and allows her to speak only in short bursts. Other communication comes by notes she writes herself, and the use of a device called a Smartbox, comparable to an iPad in appearance, which helps those with little speech.
Vitally, she insists that while her MDS has caused kidney damage, muscle weakening and a loss of hearing, it hasn’t affected her brain and she’s hoping to return to her A-level studies shortly.
She relies on regular dialysis, is fed by a tube and is attached to a ventilator that helps her breathe, but despite all her ailments, like any teenager she still enjoys watching Love Island, messaging her friends on Instagram, scrolling through social media and playing board games.
Life is life, and while her brain is still connected to her spinal cord and still working there’s no reason why this 19-year-old girl should be sentenced to death, and whatever judge puts his signature to this court order is a disgrace, and the young lady’s wishes should be respected.
However, it all boils down to money and how much money she’s costing the NHS.
The NHS is not about making her life as comfortable as possible at all. They don’t care about that, all they care about is how much money it’s costing them, and they should be ashamed of themselves. What if it was one of their loved ones? They’d soon change their tune.
And of course, it’s not the first time the NHS has refused treatment to a patient.
This girl wants to live and she should be given that opportunity. She will know when she’s had enough of fighting, and she should be given that choice.
The NHS will tell you there’s no money in the kitty for this young lady to receive treatment. Meanwhile, consultants are on 150k+ a year and have been striking for a 30-per cent pay hike.
She was told that she only had days to live, but here she is still alive and fighting for the right to be alive, and this sounds like nothing more than the NHS’s pride being bruised because they were wrong.
This is an extremely scary situation where caregivers have decided that this girl must go because they don’t want to be wrong, but the NHS will drag this out and fight this young lady in the courts. They want to save money, however, by dragging this through the courts they’re wasting taxpayers’ money, and hurting her family, both financially and emotionally, all to protect their financial interests.
This young lady has every right to try other treatments and to travel overseas if her family can raise the funds.
This young lady should be admired, but unfortunately, we have allowed Trusts to become bullies responsible for who lives and who dies based upon a spreadsheet – it’s wrong and it shouldn’t be allowed because otherwise, we may as well say that she’s an animal and animals that get really sick should be put to sleep. As human beings, we don’t have the right to say who lives or dies, apart from the person who is sick. They have that right – this young lady said NO! NO does not mean YES!
THE MONTHLY MOSQUITO 