Mum of Lancaster teen with rare kidney disease overwhelmed by response after appeal for urgent kidney donor launched

However, William Verden’s family are still seeking possible donors to help the 17-year-old who is “facing life or death.”

William 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 has launched an appeal for potential 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.

A number of people have now come forward seeing if they can help William. As investigations start to assess suitability the family want to hear from other potential donors.

Liz Davis, the specialist medical disputes and human rights lawyer at Irwin Mitchell representing Amy, said: “Amy and the rest of the family have been overcome with emotion by the response to the appeal and the messages of support they’ve received.

“While this means a lot to him, William’s condition is still extremely serious and he faces a very uncertain future.

“We, Amy and the hospital trust continue to work together to try and reach an agreement on William’s care. However, in the meantime Amy wants to explore every avenue possible to try and provide the best future for William.

“We’re continuing to support Amy at this difficult time.”

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.

Amy said: “We as a family are overwhelmed with all the responses we have received. The love and support that has been shown towards us means so much.

“Sharing our story and speaking out has been daunting. It’s something I didn’t do lightly but I felt it was necessary to raise awareness of William’s plight as the decision as to whether my boy receives a kidney could be the difference between life and death for him.

“While these last few days and people coming forward to offer a kidney gives us hope for William’s future we would be so grateful to anyone else who would like to come forward.”

The Court Of Protection 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.

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.

For more information click here. Scroll down and select the Register your interest in the ‘Donate to someone you don’t know’ section. If you still want to proceed after following the steps on the page, select north west region and then the Manchester Royal Infirmary email address. Please mention William’s name when sending an email.