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Ami McLennan, 45, from Lancaster, is leading a court battle in a ‘race against time’ for her son William Verden, 17, to receive an urgent kidney transplant.
The teenager, who has autism and attention deficit hyperactivity disorder, is currently being kept alive through dialysis at Manchester Children’s Hospital, but has been told he will stop functioning in 12 months at the latest.
Health chiefs have said he should not be offered the chance of a kidney transplant, which has a 50 per cent chance of curing his illness.
However, his family, including his mother, believe the decision is wrong and have, in effect, issued a “death sentence” for Mr. Verden.
The adolescent was diagnosed with focal segmental glomerulosclerosis kidney disease in December 2019.
After testing, Verden’s mother and father, Will, 44, and other relatives were not deemed suitable donors, prompting the family to appeal.
FSGS affects around seven in every million people
FSGS affects around seven in a million people, attacking the filtering units of the kidneys, causing scarring that leads to permanent damage and sometimes organ failure. Mr. Verden’s current kidney function is around five percent.
Judge Arbuthnot is due to hear Verden’s case at a trial at the Court of Protection, where issues relating to people who lack the mental capacity to make decisions are being considered, in Liverpool later this month.
In an online hearing on Tuesday, the Court of Protection agreed that all restrictions preventing the judicial process from being reported can be lifted.
The court will decide later this month whether it is in William’s best interest to have a kidney transplant.
Lawyers told him that heads of the Manchester University NHS Foundation
Lawyers told him that heads of the Manchester University NHS Foundation, which has responsibilities in Mr Verden’s care, wanted decisions on whether he should have a kidney transplant, continue haemodialysis or withdraw the ‘ active treatment.
The judge heard on Wednesday that withdrawal from the treatment would lead to Mr. Verden’s death. His mother doesn’t want him to finish treatment.
An attorney representing Verden’s mother said the teen had “very serious” kidney disease.
Victoria Butler-Cole QC told Ms Justice Arbuthnot that Mr Verden had few treatment options left and that he was in a “pretty serious situation”.
“With the legal case ongoing, the family is now also appealing to potential life-saving donors to come forward and help William,” said a spokesman for the Irwin Mitchell law firm, which represents Ms McLennan.
The teenager was diagnosed with focal segmental glomerulosclerosis kidney disease in December 2019.
With a legal case ongoing, the family is now also appealing to potential life-saving donors to come forward and help Mr. Verden.
If a living donor can be found, the teen will have a better chance of a successful kidney transplant.
Ms. McLennany added, “While we appreciate that William has challenges due to his learning disabilities and autism, he still deserves to receive the best possible care.”
“We have a hard time understanding why doctors can’t take into account William’s autism and make adjustments to facilitate his dialysis.
‘William is still active and enjoys many of the things that boys his age do.
“All we wanted was for him to be added to the transplant list and for his treatment to continue until a donor was found.
I feel like it’s the least she deserves and what any mother would do for her child.
If a living donor can be found, the teenager would have a better chance of a successful kidney transplant.
“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. However, none of us are suitable donors.
“It’s a race against time, but finding someone kind enough to donate a kidney would mean a lot to us.
“We know that it is an incredibly selfless act for someone to agree and there would be screenings to ensure suitability.
“With a new kidney he could enjoy the precious gift of life and enjoy a bright future for many years to come, and we hope the court will agree that he should have this opportunity.”
The court will decide at the end of this month and it may not decide that the transplant will be done at all, and even if he does, he may not be successful, but his mother wants him to be given a chance.