'I feel lucky after kidney transplant my mum fought for amid end-of-life care'
William Verden is just like any other teenager, learning new skills at college and enjoying days out with his family.
But the 18-year-old knows how lucky he is to be alive, a year after a life-saving kidney transport. William, who has autism and ADHD, was being kept alive by dialysis after suffering kidney failure.
Doctors argued that end-of-life care was in his best interests, partly due to concerns about how he would cope with a transplant due to his learning difficulties. But William’s mum Ami McLennan opposed the decision, and fought for his right to have the op.
William’s mum Ami McLennan, pictured, fought for her son to have the operation (PA)The hospital NHS trust turned to a court to decide what was best – and a judge ordered William be placed on the transplant waiting list. Today marks one year since the teenager’s successful surgery at Royal Manchester Children’s Hospital and now his kidney function is at 90 per cent.
Mum-of-three Ami, 46, who once feared she would never see her son turn 18, is delighted he has “proven medics wrong”. She said: “William has come on massively since his transplant – he’s done everything they said he wouldn’t do. He can go out and not be con-fined to machines… he can be William again.”
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The teenager – whose plight was first highlighted in this newspaper two years ago – added: “I’m so lucky… I feel good. Having no more [dialysis] lines and getting to go to college is the best."
A judge eventually ordered William be placed on the transplant waiting list (PA)William was diagnosed with the rare disease focal segmental glomerulosclerosis aged 14. By May 2020, his kidneys were operating at 14 per cent.
Doctors argued against him having a transplant, saying the chance of the disease recurring was high and that William would struggle to cope with sedation and wires attached to his body.
Manchester University NHS Foundation Trust has since denied any allegation that medics discriminated against William based on his learning difficulties. In March 2022, High Court judge Mrs Justice Arbuthnot ordered the transplant be allowed.
The months after the operation were difficult, as William contracted E. coli and sepsis and spent weeks in intensive care. But gradually, he got on the road to recovery.
Ami, from Lancashire, is delighted as she once feared she would never see her son turn 18 (PA)Ami said that since December, William’s kidney function has been at 90% and his bloods have been “amazing”. Even hospital trips are down to every other month. In January, William celebrated his 18th birthday with Ami, dad Will, 45, and siblings Ruby, 17, and Levi, 24.
But the biggest highlight has been getting back into education. Ami, of Newton, Lancashire, fought the local authority for nine months to get William a place at the special needs college in Lancaster.
She said: “Now he’s learning life skills, how to read and write, and at some point he’ll do work experience. I want William to have everything he’s entitled to, and I want to thank this newspaper for supporting him.”
Since the court case, Ami – who has developed anxiety and OCD from the stress – has been contacted by around 15 other parents of disabled children who disagree with medics’ palliative care recommendations. She said every case was different, but added: “Everyone should be treated fairly, whether they’re autistic, have Tourette’s, ADHD or any disability. They shouldn’t be written off.”
Ami said her son has 'come on massively' since the operation (Steve Allen)
William's sister Ruby (left) previously said the plight 'broke her heart'Ami is now calling for more training for medical and social care professionals when it comes to neurodiverse patients – and urged readers to become organ donors. She added: “You just have to look at William to see it can save a life.”
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Liz Davis, Ami’s lawyer at Irwin Mitchell, said William’s case was “a reminder of the difficulties too many families face in ensuring loved ones can access care”.
Toli Onon, Group Joint Medical Director for Manchester University NHS Foundation Trust, said: “Everyone’s very pleased William continues to do well. We strongly reject any allegations of discrimination – our teams are very experienced in caring for children with learning disabilities.
“We applied to the court for a decision in William’s case because all the experts involved agreed it was an incredibly complex decision, and that he faced significant risks no matter what option was chosen. The judge praised the care William received at all stages and said that leaving this decision to the court was the right thing to do.”
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