'I'm closing my charity so I can focus on living'

A woman who set up a charity in memory of her son after he died from an epilepsy-related condition has said she is closing it so she can focus on "living" and return to being "Jon's mum".

Wendy Shaw founded the Jon Shaw Foundation in 2020, a year after her son Jon died aged 19 from Sudden Unexpected Death in Epilepsy (Sudep).

Since then, the charity has raised more than £300,000 to fund equipment and services not routinely available on the NHS, including seizure monitors and alarms.

But Wendy, from Crewe, Cheshire, announced on Sunday that the charity would be wound up at the end of 2026 following what she described as a lot of "heart searching and discussion".

Explaining the decision to BBC Radio Stoke, she said: "I know it's in Jon's name but I want to go back to being Jon's mum, if you can understand that.

"If I think about Jon Shaw now, I think about the Jon Shaw Foundation. I want to go back to it being 'Jon's my little boy'."

The decision had been on her mind for "months and months", she said.

Wendy said a new grandson, approaching retirement and the demands of running the charity had all played a part.

"I'm working at the minute and the charity takes a lot of time to run and organise. I just feel like it's time to move onto living my life," she said.

She described the decision as a "massive" one, adding: "I just want Jon back. That's what made me brave enough to make that decision."

According to Epilepsy Action, Sudep affects about one in 1,000 people with epilepsy each year and occurs when somebody dies suddenly without any other clear cause.

Jon died while visiting family at home after attending an appointment with an epilepsy clinician. Wendy said there had been no signs that he was struggling.

In the aftermath of his death, setting up the foundation gave her a focus and helped her cope with her grief.

The charity has since helped fund specialist monitors, which can cost about £1,000 and alert carers to potential seizures by measuring movement, heart rate and temperature changes.

As well as providing support, Wendy said the foundation had ensured her son's memory lived on through the people it helped.

"Every single person we've helped is a tip of the hat to Jon," she said.

"He's touched their lives in so many ways that we never realised he'd be able to do."

Although the charity will close at the end of next year, Shaw said her campaigning would not.

"I'll still fight the fight," she said, adding that she planned to continue raising awareness of Sudep and working with hospitals to improve understanding of the condition.

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