A campaigning mum has told of her relief after son William Verden at last got a vital kidney transplant.
Amy McLennan took the fight for his right to surgery through the courts after medics suggested end-of-life care instead.
William, 17, who has a rare kidney disease as well as autism and ADHD, has been kept alive via dialysis with medics predicting he would not live to adulthood.
The NHS Trust caring for him had recommended palliative care, arguing that a transplant was neither in his best interests nor likely to succeed – partly due to his learning difficulties.
Amy, of Newton, Lancs, insisted what she called a “death sentence” amounted to discrimination against her son.
But recalling the moment a donor was found after an agonising five-month wait, overjoyed Amy said: “I was in complete shock. I kept pinching myself. My boy has a chance at last – this is all we’ve ever hoped for.
“My anxiety was running high but my heart was exploding with sheer relief.”
She was in a nail salon when the call came through eight days ago and she was so stunned she dropped her phone.
The High Court ruled in March that William should be added to the transplant list.
Golf fan William underwent the potentially life-saving four-hour transplant at Manchester Children’s Hospital last Sunday.
It is too early to say whether the transplant has worked, but medics have told Amy the operation – performed close to her 46th birthday – went “beautifully”.
The mum, a full-time carer for William, added: “It’s the best present I could have asked for.”
Tests showed some abnormalities in his blood levels but no obvious sign of disease recurrence. He remains under sedation and will have further tests tomorrow.
Amy, who has been reading William’s favourite Horrid Henry books at his bedside, said: “His doctors tell me he can tell I’m here because his pulse goes up a bit when I speak.”
She said of the donor’s family: “Without their sheer selfless act of kindness, my world would be fraught with heartache and fear until the time we, too, would have had to say goodbye to our boy.”
The Sunday People first told in November how Amy planned to fight a decision by bosses at Manchester Children’s Hospital to offer her and his dad Will, 44, only palliative care for William.
The lad was diagnosed with rare disease focal segmental glomerulosclerosis at 14, which affects seven in every million people. His kidneys were operating at just 40%.
By May 2020, having reached end-stage kidney failure, he was having peritoneal dialysis via his stomach at home.
Yet William adjusted and attended his special needs school until last September, when the tube opening became infected and inflamed with peritonitis.
When medics said treatment was no longer viable, Amy escalated the fight to the courts.
She claimed: “If I had listened to the doctors and this disease does not come back, he would have died for nothing.”
Amy has urged NHS Trusts to roll out extra training for staff in supporting patients with learning difficulties.
But the Manchester University NHS Foundation Trust said: “The Trust rejects any allegations of discrimination or lack of proper training from our staff.”
