Liam Williams, Tyler Gibbs and James Courtman are running the Donut Dash Marathon in Aberdare. We are friends and team mates at Vortex FC. Liam has kindly said he will run a marathon, Tyler will run half-marathon and James will be doing 3k to support Louis in his fundraising journey.

Louis was born 1 March 2021 with DiGeorge syndrome, pulmonary atresia, VSD and MAPCAs. He had two open‑heart operations at six and seven months – lungs unifocalised and a conduit fitted – with a clear plan to replace it around 18 months old. At 11 months, failures in care caused sepsis, shock and cardiac arrest, leading to brain injury; importantly, his heart itself was unaffected.

Today, aged five, his conduit has narrowed to only 4 mm – creating the very oxygen requirement cited against him. Yet since his injury, Bristol and later GOSH have refused further surgery. Decisions were taken in meetings without parents present, no minutes kept, and all evidence of Louis’s good development and progress was ignored. The refusal rests not on cardiac risk, but explicitly on his disability.

Louis is happy, sociable, responsive and continues to make steady gains; his neurological condition does not increase surgical risk. Denying planned heart repair because he has additional needs is disability discrimination. Every child deserves treatment based on clinical need – Louis’s life has full value, whatever his abilities.