A mother of a teenager who died after having an epileptic seizure while swimming has said more needs to be done to help sufferers and their families.
Hayley had no warning of her fatal epileptic seizure
Hayley Williams, who was 13 and from Newport, died in December, after the seizure began unexpectedly.
Gaynor Williams said she was only told once - in passing - that her daughter's epilepsy could one day prove fatal.
A new campaign is being launched calling for more specialist care for patients in Wales.
Hayley died during a swimming lesson at Ashgrove Special School in Penarth in the Vale of Glamorgan.
"She'd done a PE lesson. She was showing off in the pool just minutes before she died and Hayley had no warning and to be honest we're grateful for that."
An inquest is expected to take place later this year but Hayley's mother Gaynor Williams believes more needs to be done to warn people that epilepsy can put lives at risk.
She said she had only been told about the risk when Hayley was diagnosed when she was two.
"It wasn't pointed out at any hospital appointments that this could happen," she said. "It was a terrible blow and a shock to all of us."
"I was totally shocked when Hayley died the number of people with epilepsy who came up to me and said they didn't realise you could actually die in a seizure.
"Although it's a rare thing to happen it does happen and people need to understand that and live their lives according.
The charity Epilepsy Bereaved, said the illness is s responsible for up to a 1,000 deaths a year in Britain.
It is launching the Sudden Unexpected Death in Epilepsy Project (SUDEP) at the Welsh assembly on Cardiff Bay in Tuesday for more specialist care and support for patients in Wales to try and prevent more deaths.
The charity says Wales has only 14.4 whole time equivalent (WTE) neurology consultants for 20,000 people with epilepsy. It also says there are only seven epilepsy specialist nurses for the whole of Wales.
Consultant neurologist, Dr Phil Smith, one of those heading the campaign said: "People with epilepsy in Wales deserve a managed network of epilepsy care, which would bring together epilepsy specialists in primary and secondary care, nurse specialists and the voluntary sector, for more coordinated and efficient care delivery."
French horn player Cai Hywel, 22, a music student at the Royal Welsh College of Music and Drama in Cardiff was diagnosed with fairly mild epilepsy five years ago.
He said the threat of having a seizure is always going to be with him and he believes other people need educating.
"If people around you aren't aware of how to deal with the situation when it crops up it can be incredibly dangerous," he said.