William Verden, 17, has a rare kidney disease and is currently being kept alive through dialysis. William has been told that he only has at most 12 months before dialysis will stop working.
However, health bosses have said that he should not be offered the chance to have a kidney transplant, which has a 50 per cent chance of curing his disease and giving him a normal life, according to an expert instructed by the family and the hospital.
His family, including mum Amy McLennan, believe the decision is wrong and has in effect handed William, of Lancaster, a “death sentence”.
Amy, 45, has instructed expert medical treatment dispute lawyers at Irwin Mitchell to launch a legal challenge against the decision not to offer her son a kidney transplant. Amy believes the decision has been made after William interfered with lines to his dialysis machine because he has autism and sometimes finds dealing with medical treatment difficult.
With the legal case ongoing the family is now also appealing for potential life-saving donors to come forward and help William. If a living donor can be found, William would have the best chance of a kidney transplant being successful.
At a hearing today, the Court of Protection agreed that all restrictions preventing the court proceedings being reported could be lifted.
The court is to decide later this month, whether it is in William’s best interests to undergo a kidney transplant. The court may not decide that the transplant should happen at all, and even if it does, it may not be successful, but his mum wants him to be given the chance.
Liz Davis the specialist medical disputes and human rights lawyer at Irwin Mitchell representing Amy, said: “Understandably all Amy wants is what any parent wants – the best possible life and future for William. She believes this decision will be the difference between life and death.
“People with autism and other disabilities deserve the best level of care possible. However, sadly in this case Amy vehemently believes this hasn’t happened and that there hasn’t been enough focus on how to support him to tolerate treatment.
“While we are encouraged that the Trust has been working with the family to try to reach agreement on William’s care we’re determined to ensure their voice is heard on the incredibly important matter, including putting forward strong legal arguments as to why a kidney transplant is in William’s best interests.
“In the meantime we’ll continue to support the family in their search for a donor.”
William, who has autism and attention deficit hyperactivity disorder, was diagnosed with the kidney condition focal segmental glomerulosclerosis in December 2019.
FSGS 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.
He is under the care of Manchester Children’s Hospital which is run by Manchester University NHS Foundation Trust. William 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.
Following tests Amy, William’s dad Will, 44, and other relatives were not deemed to be suitable donors, prompting the family’s appeal.
William is still active. He plays golf and can hit up to 150 balls on a driving range, Amy said.
She added: “The last few months since the doctors said William should not be offered a kidney transplant have been terrible.
“We’ve repeatedly tried to make the case as to why William needs to continue his dialysis and be added to the transplant list but we feel our concerns have been ignored.
“While we appreciate William has challenges because of his learning disabilities and autism, he still deserves to be given the best care possible. We struggle to understand why the doctors can’t take into consideration William’s autism and come up with adjustments to make his dialysis easier.
“William is still active and enjoys many of the things boys his age do. 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.
“Instead it feels like we’re stuck in a situation with little hope and William facing a death sentence.
“If any of us could give William one of our kidneys we wouldn’t hesitate for a second to do so. However, none of us are suitable donors. 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.
“With a new kidney he could enjoy the precious gift of life and enjoy a bright future for many years, and we hope the court will agree he should have this chance.”
A spokesperson for Manchester University NHS Foundation Trust, which manages the Royal Manchester Children’s Hospital, said: “We recognise that this is a very difficult time for William and his family and we will continue to support them.
"Our clinicians have worked very hard to enable William’s treatment to take place so far, and he continues to have his haemodialysis, as agreed with his family, subject to any change in his clinical condition.
"The decision on whether a transplant would be in his best interest is a very complex one, requiring consideration of a range of very difficult issues including significant risks and the
possibility that his transplant would fail, which is why the Court of Protection is being asked to make a decision on the best care for William going forward.”
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.
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