A family have spoken of their joy after a judge ruled that an autistic teenage boy with a rare kidney disease should be allowed a transplant, against the judgment of doctors.
William Verden, 17, is being kept alive by dialysis at Manchester Children’s Hospital but it will stop working in 12 months at the most.
Health officials took the medical decision that William should not be offered the chance to have a kidney transplant.
That led to his family launching a legal case and an appeal for possible donors to come forward after tests showed relatives would not be suitable. William’s mother, Amy McLennan, of Lancaster, had accused the NHS of handing her son a “death sentence”.
At a court hearing in Liverpool on Tuesday, 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.”
William’s mother said going to court was not something she ever wanted. “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.”
McLennan said all she ever wanted was for William to be added to the transplant list and have his treatment continued until a donor was found. “I feel it is the minimum he deserves and what any mum would do for their child.”
The family’s lawyer, Liz Davis, of the firm Irwin Mitchell, said it was 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”.
Davis said listening to the evidence in court had been tough for the family.
“Strong legal arguments were put forward as to what is in William’s best interests. We’re pleased that the judge has ruled in William’s favour and understandably Amy and the family are overjoyed.”
William, who is autistic and has attention deficit hyperactivity disorder, suffers from steroid-resistant nephrotic syndrome.
The court heard evidence that there was a 50% chance of success. But William’s doctors argued the chance of disease recurrence after a transplant would be nearer 100%.
The hearing was told doctors could not agree to a transplant because William would suffer psychological and physical harm from post-operation sedation and ventilation to prevent him pulling out lines and catheters.
It was also argued that if a transplant proved successful then William would live a further 15 to 20 years before he needed another one.
Toli Onon, joint group medical director for Manchester University NHS Foundation Trust said of the ruling: “We welcome the clarity which this decision brings for William, his family and our clinicians.
“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.”
The court of protection considers cases relating to people who lack the mental capacity to make decisions.
A number of people have come forward wanting to help after the family launched an appeal for possible donors.
