A distraught mum is battling to stop doctors sending her son home for what may be his last Christmas.
William Verden, 16, made a heartbreaking plea: “I don’t want to die. My tubes keep me safe.”
Doctors have ruled the teenager, diagnosed with a rare kidney disease two years ago, should no longer have life-saving treatment and receive palliative care instead.
Mum Amy, 45, is aghast at the “death sentence” decision and is prepared to go to the High Court to keep her boy alive.
Today, he was well enough to play golf – and can still hit up to 150 balls on a range.
Amy 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.”
NB PRESS LTD)
Get all the latest news sent to your inbox. Sign up for the free Mirror newsletter
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.
Amy said: “He is probably going to die from this. But he’s not ready to die now. He deserves a chance like everyone.”
She fears William’s autism and ADHD have influenced the decision, as many kidney patients receive dialysis for their entire lives.
William has interfered with tube lines and entry points, and at times needed restraining during dialysis.
NB PRESS LTD)
Amy said: “It’s his disability, he’s not interfering with the line on purpose. He hated dialysis at first, then he got used to it – he just needs time. I don’t believe doctors would be advising us in this way if he wasn’t autistic.”
She and William’s dad, Will, 43, won’t accept Manchester University NHS Foundation Trust’s recommendation.
They believe their son should continue to receive therapy and be added to the transplant waiting list.
In December 2019, a routine blood test revealed William, then 14, had focal segmental glomerulosclerosis.
NB PRESS LTD)
His kidneys were functioning at just 40%. FSGS afflicts around seven in every million people, attacking the kidneys’ filtering units, causing scarring that leads to permanent damage and, sometimes, organ failure.
William was initially on steroids but by May 2020, having reached end-stage kidney failure, he was having peritoneal dialysis via his stomach at home. It uses the lining of the abdomen to filter blood inside the body.
Amy joined her son at the dialysis machine from 4pm until 2am, six days a week.
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.
He would scream and get violent at times.”
NB PRESS LTD)
Yet William adjusted and led a “normal life”, attending his special needs school until this September, when the tube opening became infected and inflamed with peritonitis.
He spent two weeks at MCH, where medics said the treatment was no longer viable.
Amy said: “It was the first time they said the words ‘palliative care’.”
She begged them to try hemodialysis (HD), where blood is pumped from the body to an artificial kidney machine and returned by tubes.
She said: “Doctors were not keen because they knew William touched his dressings and picked at his body.”
But after a meeting between health trust staff, his social worker and his parents, William had a HD line fitted on September 22.
He began visiting the hospital three times a week for treatment but often screamed, cried and pulled dressings off.
NB PRESS LTD)
NB PRESS LTD)
Security staff were often needed to restrain him.
A consultant’s report said William “tried to disconnect himself repeatedly, putting himself at risk as well as dialysis staff” and sessions often had to be prematurely stopped, resulting in “inadequate dialysis”.
William also found the fluid and diet restriction involved in treatment difficult.
In the first month, he needed the lines replaced or repositioned three times.
On the third occasion, on October 20, Amy and Will were advised that palliative care would be the best form of action.
“I was at a loss for words – then I just said no,” said Amy, who lives in Newton, Lancs.
She said: “Yes, there have been difficulties with HD but he’s getting used to it now and just needs more time.”
Children with FSGS progressing to kidney failure have a life expectancy of around 19 years following the start of dialysis but can live an average of 40 after a transplant. It is unclear if this differs in those who have ADHD and autism.
A letter from the Clinical Ethics Committee at Manchester University Foundation Trust said “every effort” has been put in place to treat William but concludes that continuing would do “more harm […] than good.”
There is an “extremely high” likelihood that FSGS would recur in a transplanted kidney, it found.
A consultant from another hospital said he “can only envisage William lurching from one crisis to another on dialysis”.
Reinsertion of dialysis lines “will gradually become more difficult” and “may become impossible,” he said, adding: “With these recurrent crises I think it would be highly unlikely he will live long enough to make it to transplant on the waiting list.”
Amy, also mum to Levi, 24, and Ruby, 15, said: “Since going on HD his bloods are better and so is his quality of life as he’s not tied to the machine for 10 hours a night.
Last week I took him shopping and for lunch – then he went to respite and played pool until 9pm.
“Every Sunday he goes golfing. The other day he walked 4.5 miles on the course.”
And fun loving William has even dressed up as a chef at his school and as a security guard at hospital.
If MFT and William’s parents cannot reach a resolution the courts will have to decide.
Amy said: “This whole thing is a nightmare. My daughter is devastated, she cries all the time. I will never live with myself if I don’t fight for him to have this chance.”
Liz Davis, of Irwin Mitchell lawyers, which is supporting William’s family, said: “All Amy wants is the best possible life and future for William. We’ll continue to support Amy and the family to ensure their voices are heard.”
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.”