Mother’s desperate plea to the doctors to keep giving her son life-saving treatment

A broken mother begs hospital managers to keep giving her teenage son life-saving treatment.

William Verden, from Newton in the Ribble Valley, suffers from a rare kidney disease and may soon be switched to palliative care instead.

Mother Amy, 45, says he has an “incredible” quality of life and promised to take the fight to the district court in an attempt to keep her boy alive.

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Meanwhile, William 16 prayed, “I will not die. My pipes keep me safe.”

Amy said, “They’re sending him home to die. I’ll never let that happen.

“If William was in pain or bedridden, I obviously would not 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 and wondering if this will be Williams’ last Christmas, or if he will reach it at all if he goes 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, Amy said.

But doctors believe his complex autism means it cannot be performed properly.

Doctors treating him at Manchester Children’s Hospital received a second statement from a Newcastle expert, who said his kidneys were “damaged” – and that a transplant was unlikely to work and involve major risks.

Amy said: “He’s probably going to die from this. But he’s not ready to die now. He deserves a chance like everyone else.”

She fears Williams’ autism and ADHD have influenced the decision, as many kidney patients receive dialysis their entire lives.

William is receiving treatment at the hospital
William Verden could soon be moved to palliative care

William has disrupted pipelines and entry points and has at times needed to hold back during dialysis.

Amy said: “It’s his disability, he does not interfere on purpose. He hated dialysis in the beginning, then he got used to it – he just needs time. I do not think the doctors would advise us in this way, if he was not autistic. ”

She and Williams’ father, Will, 43, will not accept the 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 that William, then 14, had focal segmental glomerulosclerosis.

His kidneys functioned only 40%. FSGS affects about seven out of every million people, attacks the filtration units of the kidneys and causes scarring that leads to permanent damage and sometimes organ failure.

William The World swings monkeys
William Verden could soon be moved to palliative care

William was originally on steroids, but in May 2020, after reaching the end stage of kidney failure, he underwent peritoneal dialysis via his stomach at home. It uses the lining of the stomach to filter blood inside the body.

Amy joined her son at the dialysis machine from 6 p.m. 16:00 to 02:00, six days a week.

She said: “In the beginning it was awful, it took two hours to entice him to move on and he had to be busy all the time.

He would scream and get violent at times. ”

Still, William adapted and lived a “normal life” and went to his special school until September, when the snake opening became infected and inflamed with peritonitis.

He spent two weeks at MCH, where doctors 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 with tubes.

She said: “The doctors were not keen because they knew William was touching his bandages and plucking at his body.”

But after a meeting between health care staff, his social worker and his parents, William was fitted with an HD line on 22 September.

He started visiting the hospital three times a week for treatment, but he screamed, cried and pulled off bandages.

Security personnel were often needed to hold him back.

A consultant’s report said William “repeatedly tried to interrupt himself and put himself at risk as well as dialysis staff”, and sessions often had to be stopped prematurely, resulting in “inadequate dialysis”.

William plays golf
William is fit enough to play golf regularly

William also found the fluid and diet restriction involved in the treatment difficult.

In the first month, he needed the lines replaced or relocated three times.

At the third time, on October 20, Amy and Will were informed that palliative care would be the best form of action.

Amy said, “I was in doubt about words – so I just said no.

“Yes, there have been difficulties with HD, but he’s getting used to it now and just needs more time.”

Children with FSGS who develop kidney failure have a life expectancy of about 19 years after the start of dialysis, but can live an average of 40 years after a transplant. It is unclear whether this differs in those who have ADHD and autism.

A letter from the Clinical Ethics Committee of the Manchester University Foundation Trust said “every effort” has been made to treat William, but concludes that it would do “more harm” […] than benefit. ”

William works as a security guard at a local event
William works as a security guard at a local event

There is an “extremely high” probability that FSGS would recur in a transplanted kidney, it found.

A consultant from another hospital said he “can only imagine William hovering from one crisis to another in dialysis”.

Reinstatement of dialysis lines “will gradually become more difficult” and “may become impossible,” he said, adding: “With these recurring crises, I think it would be highly unlikely that he will live long enough to be transplanted on the waiting list.”

Amy, also the mother of Levi, 24, and Ruby, 15, said: “Since he was hit by HS, his blood is better and so is his quality of life as he is 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 6 p.m.

“Every Sunday he goes to golf. The other day he went 4.5 miles on the course.”

William World plays a computer game
William Verden

And cheerful William has even dressed up as a chef at his school and as a security guard at the hospital.

If MFT and Williams’ parents are unable to reach a solution, the courts must rule.

Amy said: “This whole thing is a nightmare. My daughter is crushed, she cries all the time. I will never live with myself if I do not fight for him to get this chance.”

Liz Davis of Irwin Mitchell’s attorneys, who support Williams’ family, said: “All Amy wants is the best possible life and future for William. We will continue to support Amy and the family to ensure their voices are heard.”

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

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