Lancaster mum wins appeal for son William Verden to have potentially life-saving kidney transplant

27022022 - William Verden, 17, has kidney disease and is on dialysis - Granada Reports
At the centre of a treatment dispute is 17-year-old William Verden, who has a rare kidney disease. Credit: Family photo

A mother has won an appeal for her teenage son to have a potentially life-saving kidney transplant after medical specialists questioned whether it was in his "best interests."

William Verden, 17, from Lancaster, has a rare kidney disease called steroid resistant nephrotic syndrome, which means they function at just 5%.

He has been a patient at Manchester Children's Hospital since November 2019 and needs dialysis at least four times a week.

His mum, Ami McLennan, has always believed a transplant is William's best chance at life, but specialists at the hospital could not agree over what treatment he should have.

They argued the chance of disease recurrence from a transplant would be nearer 100%.

William and his mother Ami. Credit: Family photo

The court, sitting in Liverpool, was told that if a transplant proved successful then William would live a further 15 to 20 years before he needed another one.

William has autism and ADHD and in the eyes of the law he lacks the mental capacity to make decisions for himself. 

But without a new kidney William's doctors said he may only have around 12 months to live, which is why his mother Ami has fought hard to get his case to court.

William’s mother was concerned throughout the process that he was being refused a transplant because of his learning disabilities - something the hospital have always denied. 

They say they were simply worried a transplant would not work and that his learning disabilities would mean having to sedate him to stop him pulling at the wires and tubes.

With both parties in disagreement, Manchester University NHS Foundation Trust brought the case to ask a judge to rule on the matter.

William has been receiving treatment at Manchester Children's Hospital since 2019. Credit: PA images

On Tuesday, 8 March, the court in Liverpool concluded that William would be able to get a kidney transplant and he is now on the waiting list for a donor.

Ruling that a transplant was in the teenager's best interests, Mrs Justice Arbuthnot said: "Transplant is not futile. Although the chances of that lead to an increase in William's suffering in the short and medium term, it has the commensurate benefit which is there is a chance for William of long-term survival."

Following the decision, Ms McLennan said: "All we have wanted was for him to be added to the transplant list and his treatment to be continued until a donor is found.

"I feel it's the minimum he deserves and what any mum would do for their child.

"As a family we still struggle to comprehend why William's case has gotten to this stage but this judgment is about trying to look to the future.

"What's happened is in the past and we now need to focus on trying to find the crucial donor who can provide William with the best chance in life.

"We continue to be amazed by how many people have been touched by William's story and remain ever so thankful to those who have expressed a wish to potentially become a donor or who have contacted us with messages of support."

William has autism and ADHD and specialists had questioned whether a transplant would be in his "best interests." Credit: Family photo

Joint Group Medical Director for Manchester University NHS Foundation Trust, Ms Toli Onon, has welcomed the court's decision.

She said: "The Trust asked the Court of Protection to make today’s judgment because of how unusual, complex and risky the situation is.

"William has a rare condition affecting his kidneys, and each treatment option had its own risks to his health and wellbeing.

"That’s why we asked the Court to make this difficult decision, and why the judge noted that she respected our approach to establishing what’s best for William.

"William, his family and our staff have all worked really hard together to support his dialysis; and we will now be liaising with William and his family regarding how best to progress his treatment."

William’s mum put an appeal out for a donor in February and she was overwhelmed with the response from members of the public - complete strangers who wanted to help.