Boy, 16, begs doctors I dont want to die as NHS orders end-of-life care

A 16-year-old has begged doctors not to let him die after the NHS said he should receive end-of-life care over a rare kidney disease.

William Verden has made the heartbreaking plea to doctors along with his distraught mum Amy, 45.

He said: "I don’t want to die. My tubes keep me safe.”

Amy has been left devastated as she said her son has been given a "death sentence".

William was diagnosed with a rare kidney disease two years ago. Amy is now prepared to go to the High Court to keep her son alive, the Mirror reports.

She said: “They are sending him home to die. I’ll never let it happen.

“If William was in pain or bed-bound then of course I wouldn’t want him to suffer – but he has an incredible quality of life. He plays golf twice a week, I take him shopping, he plays with the local kids.

"We are in limbo wondering if this will be William’s last Christmas, or whether he will even make it to then if he has to go on palliative care.”

William, who also has attention deficit hyperactivity disorder and autism, is kept alive through dialysis and without it would have “days or maybe weeks” to live, said Amy.

But medics believe his complex autism means it cannot be carried out properly.

Doctors treating him at Manchester Children’s Hospital were given a second opinion by an expert from Newcastle who said his kidneys are “devastated” – and a transplant is unlikely to work and carries huge risks.

She fears William’s autism and ADHD have influenced the decision to cut his dialysis short.

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William has interfered with tube lines and entry points, and at times needed restraining during dialysis.

She and William’s dad, Will, 43, won’t accept Manchester University NHS Foundation Trust’s recommendation and believe their son should be added to the transplant waiting list.

In December 2019, a routine blood test revealed William, then 14, had focal segmental glomerulosclerosis (FSGS), a rare kidney condition.

William was initially on steroids but by May 2020, having reached end-stage kidney failure, he was having peritoneal dialysis via his stomach. It uses the lining of the abdomen to filter blood inside the body.

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She said: “At first it was horrendous, it took two hours to coax him to get on and he’d have to be occupied the whole time."

A letter from the Clinical Ethics Committee at Manchester University Foundation Trust found that there is an “extremely high” likelihood that FSGS would recur in a transplanted kidney.

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

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