Mother's donor appeal to save Lancaster teen with kidney disease as medics question treatment

  • Amy Welch reports live from Royal Manchester Children's Hospital.

A mother has launched an appeal to find a kidney donor for her son in an attempt to save his life after specialists asked if they could stop treating him.

William Verden, 17, who has autism and is being treated at Manchester Children's Hospital, is facing a "race against time" according to mother Ami McLennan.

But, specialists want a judge to decide if they can stop treating the teenager, who is in a "pretty dire situation".

William Verden, 17, has autism and kidney disease - specialists want to withdraw treatment but his mother is appealing for a donor. Credit: Family handout/Irwin Mitchell

Ms McLennan, from Lancaster, said tests had shown that relatives were not suitable donors.

"If any of us could give William one of our kidneys we wouldn't hesitate for a second to do so," she said.

"It's a race against time but finding someone kind enough to donate a kidney would mean the world to us.

"We know it's an incredibly selfless act for someone to agree to and there would be assessments to ensure suitability."

  • William's mother Ami McLennan says a learning disability should "not carry a death sentence".

William is now at the centre of a court dispute in the Court of Protection, where issues relating to people who lack the mental capacity to make decisions are considered.

It will be decided in Liverpool later this month.

William, who has autism and attention deficit hyperactivity disorder, was diagnosed with the kidney condition focal segmental glomerulosclerosis in December 2019. The disease only affects around seven in every million people, attacking the kidneys’ filtering units, causing scarring that leads to permanent damage and, sometimes, organ failure.

William’s current kidney function is around five per cent, though he is still active including playing golf and regularly hitting up to 150 balls on a driving range.

He is under the care of Manchester Children’s Hospital which is run by Manchester University NHS Foundation Trust and was initially on steroids. But by May 2020, having reached end-stage kidney failure, he was having dialysis via his stomach at home 10 hours a day, six days a week.

Hospital bosses want a decision on if William should have a transplant, continue haemodialysis, or if "active treatment" can be withdrawn. Credit: Family handout/Irwin Mitchell

Mrs Justice Arbuthnot considered preliminary issues at an online hearing on Tuesday, 8 February.

Lawyers told her that bosses at the Manchester University NHS Foundation Trust wanted decisions on whether 17-year-old William should have a kidney transplant, continued haemodialysis, or whether "active treatment" should be withdrawn.

But, the judge heard that the withdrawal of treatment would lead to William's death.

A barrister representing Ms McCleannan said the teenager had "very bad" kidney disease.

"We are already at the stage where he has very few options left for his treatment," Victoria Butler-Cole QC told Mrs Justice Arbuthnot.

"He is in a pretty dire situation."

William's mother wanted reporters to be allowed to name him in reports of the litigation.

Judges normally rule that patients at the centre of Court of Protection proceedings should not be named in media reports, in line with their human right to respect for privacy and family life.