A Tywyn man is raising awareness of Phenylketonuria (PKU), a rare genetic condition that affects the lives of hundreds of people in Wales.

Mark Edwards lives with PKU and has long campaigned for better access to treatment and understanding.

PKU affects around 1 in 10,000 babies born in the UK.

Those with PKU must follow a strict low-protein diet from birth to avoid irreversible brain damage. Many rely on specialist medical foods and supplements, but access to these remains inconsistent, and life-changing treatments like Kuvan are not universally available.

Helping Mark raise awareness of this is Dwyfor Meirionnydd MP, Liz Saville Roberts, who delivered a message of solidarity in Westminster recently, has spoken previously on the issue and taken part in the PKU Diet Challenge. She has also raised the matter in Parliament, calling for equitable access to care and greater investment in research.

She said: “It’s always a privilege to stand alongside people who are not only living with a rare condition like PKU, but also leading the charge for change.

“When you meet someone like Mark and hear what it means to live with PKU - the constant calculations, the fear of slipping up, the fight for access to basic treatments - you realise this is not just a medical issue. It’s a matter of fairness, dignity, and of being heard.

“I’ve taken part in the PKU Diet Challenge. I’ve tried to live, for a short time, with restrictions people with PKU face every day. It’s hard. It’s isolating, and a powerful reminder of why we must do more.

“We need to ensure life-changing treatments like Kuvan are available to all who need them, no matter where they live. We need guaranteed access to specialist foods and support services that make life manageable for those with PKU. And we need to listen to those who live with PKU day in, day out.’’