In Loving Memory of Billy Patrick Slater – A Brave Boy Taken Too Soon

With heavy hearts, we share the tragic passing of 8-year old Billy Patrick Slater, a beloved son, brother, grandson, nephew and friend. Billy passed away on December 28th, 2024, after a courageous battle with a rare genetic metabolic condition, Ornithine Transcarbamylase Deficiency (OTC). Billy’s story is one of immense strength and resilience, and we hope this page will not only help us to remember the incredible boy he was but support other families like ours. Through your donations, we can ensure that Billy’s story continues to inspire hope, raise awareness, and support those who need it most.

Billy’s Journey

At 10 months old, Billy became gravely ill with a mysterious illness leaving him in a coma and after extensive testing was diagnosed with a urea cycle disorder known as OTC and was fortunate to recover fully from the episode. Billy had difficulty in breaking down protein in his body meaning he had to have a restricted protein diet and medication to ensure his wellbeing as well as following an emergency regimen with every illness. Ammonia could build up in Billy’s bloodstream when he was unwell or when he had too much protein in his body becoming highly toxic and putting him at risk of brain damage, with it being life threatening. Despite his challenges, Billy’s spirit remained unbreakable. When well, he lived a full life and through illnesses fought with the kind of bravery most adults would envy.

From a very young age, hospital visits became a regular part of Billy’s life. Billy was fitted with a port a Cath which was a device attached under his skin to a main vein to take bloods and give fluids and medication when he was unwell. During the winter months, Billy would often need multiple hospital admissions to prevent or treat high blood ammonias caused by every day viruses. In December 2024, Billy was once again admitted to hospital after suffering from sickness and flu-like symptoms at home.

On Friday, December 20th, Billy was tested and found to be positive for Influenza A, which caused high blood ammonia. This temporarily seemed to improve over the course of the next day with treatment. However, things took a turn for the worse as Billy’s ammonia levels began to rise again, causing him to become delirious and severely agitated. Despite all efforts to treat him, his ammonia levels continued to spike, leading to life-threatening complications.

On December 23rd, Billy’s medical team, knowing how serious the situation was due to the complexity of his rare condition, made the decision to transfer him for specialist care at Sheffield Children’s Hospital. Billy was sedated in the ambulance to make the journey more comfortable, accompanied by specialist staff and his parents, Jo and Max, followed behind in their car. Billy was immediately admitted to the Pediatric Intensive Care Unit (PICU) and placed on a ventilator to help support his breathing, while his body received haemofiltration in an attempt to reduce the dangerous ammonia levels.

On Christmas Day, Jo and Max were given devastating news. A CT scan revealed swelling in Billy’s brain, and an MRI on December 27th confirmed that the damage was too severe. The doctors told them there was no hope for recovery, and Billy would not survive without the aid of life support.

Billy sadly passed away on 28th December 2024, in the arms of his wonderful Mum and Dad.

Our Hero

Billy was a cheeky, fun-loving, and hilarious boy who brought light to all who knew him with his infectious smile. He loved his family deeply, and was the ultimate brother to both Pippa and Kit. His love of football, Minecraft, Lego building and most recently Home Alone (which he watched about 5 times in the lead up to Christmas) kept him happy and content and he loved nothing more than being at home, with his family and two loving dogs Bobby and Buzz.

Billy’s courage through it all is something we will never forget, and while we are heartbroken by his passing, we know his memories will live on in all those who were lucky enough to have known him.

Jo and Max want to honour Billy’s memory by raising funds for an incredible charity that supported him and so many others like him called Metabolic Support UK.

Metabolic Support UK is a leading charity that supports individuals and families affected by inherited metabolic disorders. They provide critical information, guidance, and advocacy, while also funding vital research into these life-threatening conditions. Their work not only helped Jo and Max understand Billy’s diagnosis but also give hope for the future of others facing similar battles.

Thank you for your love, your thoughts, and your support during this incredibly difficult time. Your kindness has meant the world to us.

With love,

Billy’s family