A mum says her autistic son needs a transplant but medics argue it is not in his best interests.
Image source, FAMILY HANDOUT
The mother of an autistic teenager at the centre of a legal battle has launched an urgent appeal for a kidney donor to save her son’s life.
Ami McLennan from Lancaster said a transplant was her son William’s only chance and without it he would have just 12 months to live.
Royal Manchester Children’s Hospital argued a transplant was not in the 17-year-old’s best interests.
The BBC successfully challenged an anonymity order to name him.
Ms McLennan said: “He deserves that chance. I’m just fighting for what he and everybody else with a learning disability should be entitled to.
“Nothing will ever stop me fighting for my son.”
William’s future is in the hands of a Court of Protection judge who must decide on the best course of treatment.
‘Reasonable adjustments’
William, who has just 5% kidney function, can articulate his wishes and has said very clearly he does “not want to die”, Ms McLennan said.
The keen golfer has a rare kidney disease Focal segmental glomerulosclerosis (FSGS) which means he needs to receive dialysis for four hours, four times a week.
At one stage he was hooked up to various machines for 10 hours a day.
Even with dialysis, his condition means he only has a life expectancy of 19 years but a successful transplant could extend his life by another 20 years.
His autism and ADHD make the treatment more difficult because he struggles to cope with the wires, the tubes and the various medical procedures.
Even if a suitable donor is found, medics said there was very little guarantee a transplant operation would be successful, his condition could reoccur in a new kidney and he may not be able to tolerate the procedure because of his autism.
They fear he would have to spend six weeks sedated and ventilated in intensive care to ensure he complies with the interventions after the operation.
William’s mother said her son had already proven on repeated occasions with time, patience and the necessary reasonable adjustments he could cope with such complex procedures.
Image source, Family handout
She said: “He is an active 17-year-old boy. He shouldn’t be denied an operation anyone else would have the right to just because of his autism.
“We feel we have had to fight for William at every stage of his life.
“Without lifting the reporting restrictions, we had nothing.”
At a remote hearing on Tuesday, the BBC overturned the court order which had prevented Ms McLennan being able to raise the profile of his case, and make this plea for a living donor.
Lifting the reporting restrictions, Mrs Justice Arbuthnot recognised time was running out for William and that the family needed to be able to speak out.
She told the court: “It will take time and no doubt the best option is a live donor rather than a dead donor if a transplant is found to be in William’s best interests.”
William’s family are not suitable donors because of their own health conditions, so they are desperately searching for a live donor.
That would allow them the time to plan the operation and psychologically prepare William for any procedure that followed.
Ms McLennan said: “Now we can try and find a donor and we’ll get ready to fight the next battle.”
A Court of Protection hearing to decide whether William should be added to the transplant list will be heard in the next three weeks.
The BBC has approached Manchester University NHS Foundation Trust for comment.
