England, William is 17, autistic, he has ADHD (attention deficit / hyperactivity disorder) and learning difficulties. He needs a kidney transplant to have a chance at life.
In December 2019, William was diagnosed with a rare kidney disease, steroid-resistant nephrotic syndrome. He underwent frequent home dialysis, which stopped working in September last year.
It was then that the doctors, instead of proposing William and his mother to be placed on the waiting list for kidney transplant, began to talk about palliative care for the first time. “There was a huge meeting and I begged them to give him a chance. I had to beg … I was crying, I was absolutely heartbroken. I don’t see why I should have had to fight for everything everyone else is entitled to”.
Who’s telling this story is William’s mother, Amy McLennan, who obviously did not give up on the decision of the doctors. If she had done so, William would have been sent home in September, received palliative care, and died. But last week, after a series of hearings, a high court judge ruled that a transplant was in William’s best interest.
William’s story has brought to light, the family’s lawyers say, a wider and more serious reality about the type of medical treatment given to autistic people and people with learning disabilities. “If he was a ‘neurotypical’ child, he would already have had a transplant or been on the transplant list”.
According to the doctors, William is a complex medical case, while for Amy he is nothing more than a kind and helpful boy, always available to help. He loves cleaning, he loves painting walls, he loves going for walks. He loves school, he loves loud music, he loves Michael Jackson, Annie Lennox, Fleetwood Mac.
We learned about William’s case 20 days ago, when everyone was hoping for the sentence for his near future. For once, justice has run its course. William will have the right, like everyone in his situation, to be placed on the transplant list. This does not mean he will surely find a donor but that he will have the same chances as anyone and it’s not small thing. The transplant will extend its life by at least 15/20 years and it is clear that the best interest can never be death.
In the UK, some associations have also taken action to look for a living donor, someone who will take care of William and make himself available to check any compatibility.