Judge says autistic teen with rare kidney disease can seek transplant | NHS
A family have shared their joy after a judge ruled an autistic teenager with a rare kidney disease should be allowed to undergo a transplant, against doctors’ advice.
William Verden, 17, is being kept alive on dialysis at Manchester Children’s Hospital but will stop functioning in up to 12 months.
Health officials made the medical decision not to offer William the option of having a kidney transplant.
This led his family to take legal action and appeal for possible donors to come forward after tests showed relatives would not be suitable. William’s mother, Amy McLennan, from Lancaster, had accused the NHS of giving her son a ‘death sentence’.
At a hearing in Liverpool on Tuesday, Judge Arbuthnot ruled a transplant was in the boy’s best interests.
“The transplant is not in vain,” she said. “While the chances of this will lead to increased suffering for William in the short to medium term, it has the proportionate advantage that there is a chance for William to survive in the long term.”
William’s mother said going to court was not something she always wanted. “As a family, we are still struggling to understand why William’s case has come to this stage, but this judgment is about trying to look to the future.
“What happened is in the past and now we have to focus on finding the crucial donor who can give William the best chance at life.”
McLennan said all she wanted was for William to be added to the transplant list and for his treatment to continue until a donor was found. “I think that’s the minimum he deserves and what any mother would do for her child.”
The family’s attorney, Liz Davis, of Irwin Mitchell, said it was an “incredibly sensitive matter which has sparked a very important discussion not only about William’s care, but about the issue as well. wider provision of medical treatment for people with autism and learning disabilities.”
Davis said listening to evidence in court was difficult for the family.
“Strong legal arguments have been made as to what is in William’s best interest. We’re delighted the judge ruled in William’s favor and, naturally, Amy and the family are thrilled.
William, who is autistic and suffers from 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 that the risk of the disease recurring after a transplant would be closer to 100%.
The hearing was told doctors could not agree to a transplant because William would suffer psychological and physical damage from post-operative sedation and ventilation to prevent him from removing lines and catheters.
It has also been speculated that if a transplant was successful, William would live another 15 to 20 years before needing another one.
Because the two sides were at odds, the University of Manchester NHS Foundation Trust brought the case to ask a judge to rule on the matter. The trust has been approached for comment.
William’s case was heard by the Protective Court which reviews cases relating to people who lack the mental capacity to make decisions.
A number of people have come forward to help after the family appealed for possible donors.