I’m 16 but docs say I should receive end-of-life-care – I don’t want to die

I’m 16 but docs say I should receive end-of-life-care – I don’t want to die

A TEENAGE boy has pleaded doctors not let him to die after medics ruled to stop his life-saving treatment.

William Verden, just 16, has a rare kidney disease that could mean this Christmas is his last – as he told docs: “I don’t want to die”.

Nigel Bennett/Mirrorpix

William’s mum Amy has vowed not to let the plans go forward[/caption]

Nigel Bennett/Mirrorpix

William struggles with treatment due to his autism[/caption]

He was diagnosed in 2019 with focal segmental glomerulosclerosis (FSGS), where scar tissue develops on the parts of the kidneys that filter waste from the blood, which can lead to kidney failure.

The 16-year-old’s horrified mum Amy told The Sunday Mirror: “They are sending him home to die.”

Amy, 45, said her son has a “brilliant” quality of life and is currently well enough to hit up to 150 balls on a golf course.

She said he also plays with other kids and joins his mum on shopping trips.

Amy from Newton, Lancs, said: “If William was in pain or bed-bound then of course I wouldn’t want him to suffer.”

The mum vowed to never let the doctors cut off treatment and send her son into palliative care, as recommended.

She added: “We are in limbo wondering if this will be William’s last Christmas.”

William, who also has attention deficit hyperactivity disorder (ADHD) and autism, is kept alive by dialysis – without it he could have just days or weeks left to live, his mum said.

However doctors said his complex autism means the treatment can’t be carried out properly.

William has interfered with kit used in the dialysis and has sometimes been restrained.


Following treatment at Manchester Children’s Hospital, doctors requested a second opinion from an expert at Newcastle – who said his kidneys were “devastated” and a transplant would carry huge risks.

The decision was put forward after William had to be switched to a new type of tube treatment – hemodialysis (HD) – after the tube openings for dialysis became infected and inflamed.

William picks at his body and touches his dressings, and doctors were unsure wether to switch him over to the new tube treatment, but Amy begged them.

But during the treatments, which he had to have three times a week, William would scream and cry and sometimes remove the dressings himself.

And sometimes, security staff were needed to restrain him.

He needed his lines replaced or repositioned three times during the first month, at which point doctors advised palliative care would be the best plan.

His mum fears her son’s neurological conditions have influenced doctors – with some people receiving the treatment all their lives.

The mum said she does not believe docs would be issuing the advice if he wasn’t autistic, urging the medics to give him “more time” to get used to the treatment.

And she said her son is not ready to die.

‘I’M NOT READY TO DIE’

She and William’s dad, 43, said they won’t accept the trust’s recommendation.

Amy said William’s brother Levi, 24, and Ruby, 15, are horrified by the news – with Ruby unable to stop crying.

William was diagnosed with FSGS aged just 14 – when horrified medics realised his kidneys were functioning at just 40 per cent.

Children with FSGS have a life expectancy of around 19 years from the beginning of dialysis – but it’s not clear if this differs in autistic people.

A letter from the Clinical Ethics Committee at Manchester University Foundation Trust said “every effort” had been put in to help William – but continuing would be detrimental.

And it found it likely that FSGS could reoccur in a transplanted kidney.

A consultant said she could see William “lurching from one crisis to another on dialysis”.

They added it was unlikely William would live long enough to make it onto the transplant waiting list.

MFT, which manages the Royal Manchester Children’s Hospital, told The Sunday People: “We recognise that this is a very difficult time for William and his family and we will continue to support them.”  

Nigel Bennett/Mirrorpix

William is ‘not ready to die,’ his mum said[/caption]

Nigel Bennett/Mirrorpix

The family are devastated by the reccomendation[/caption]

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