Learning Disability Today
Supporting professionals working in learning disability and autism services

Autistic teenager with rare kidney disease wins right to have a transplant

Photo credit: family handout


A judge in the Court of Protection has ruled that an autistic teenager with a rare kidney disease should be allowed to receive a potentially life-saving transplant. 

William Verden is 17 years old and has steroid-resistant nephrotic syndrome. He is currently being kept alive through dialysis, with less than 12 months before it will stop working. 

Manchester NHS Health Trust opposed a transplant because William would suffer psychological and physical harm from post-operation sedation and ventilation to prevent him pulling out lines and catheters. They also believed the chance of recurrence was “high”, nearly 100%.

The court heard evidence that if a transplant proved successful then William would live a further 15 to 20 years before he needed another one.

At a court hearing in Liverpool last week, Mrs Justice Arbuthnot ruled that a transplant was in the boy’s best interests. “Transplant is not futile,” she said. “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.”

The family’s law firm says the case prompts a wider issue of  providing medical treatment to people with autism and learning disabilities and what is deemed in their best interests.

Liz Davis, the specialist medical treatment disputes and human rights lawyer at Irwin Mitchell representing his mother Amy McLennan, said after the hearing: “Naturally as a parent all Amy wants is to offer her son the best chance in life; she strongly believes a transplant will give William this. 

“This is an incredibly sensitive case which has prompted a really important discussion not only about William’s care  but also about the wider issue of  providing medical treatment to people with autism and learning disabilities. 

“While the last few days and listening to the evidence has been tough for Amy and the rest of the family it was something they felt they had to do to try and safeguard William’s future. Strong legal arguments were put forward as to what is in William’s best interests.”

Appeal for potential donors to come forward

His mum Amy said that bringing a legal case wasn’t something they ever wanted or thought they would need to do, however, William’s situation is critical and could mean the difference between life and death. 

She added: “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.”

Manchester University NHS Foundation Trust said they welcomed the clarity which this decision brings for William, his family and clinicians. It asked the Court of Protection to make the judgment because of how unusual, complex and risky the situation is.

Toli Onon, joint group medical director, added: “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.”

About kidney donation 

Kidneys are the most commonly donated organs by living people. With around a third of all kidney transplants in the UK resulting from living donors, say NHS Blood and Transplant. Around 1,100 such operations are performed in the UK a year with a high success rate. 

Donating a kidney to someone who is neither a relative nor a friend is known as directed altruistic donation. Prospective donors will need to undergo medical tests before a decision on whether they are a suitable donor is made.  More information can be found on the NHS Blood and Transplant website.


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