'Charity work was my therapy after my son's death'

A bereaved mother who founded a charity supporting young people with epilepsy has said it was part of her therapy following her son's death.

Wendy Shaw set up the Jon Shaw Foundation in 2020 in memory of her 19-year-old son Jon, who died the year before from a condition known as Sudden Unexpected Death in Epilepsy (Sudep).

Since then, she has raised more than £330,000 towards paying for equipment and services not available on the NHS, including monitors and alarms.

Shaw, from Crewe, Cheshire, told BBC Radio Stoke: "I didn't want Jon's name to just be forgotten."

She said: "I know he only lived for 19 years but… I didn't want him to disappear. I wanted his name to be known everywhere."

She added that she did not know how she was going to cope following Jon's death.

"I'd lost my youngest child and, to be honest, I think setting up the charity was part of the therapy for me," she said.

The group tries to raise awareness of Sudep and Shaw said even some hospital staff she had spoken to were unaware of the condition.

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

Shaw said there were no signs of Jon struggling before his death, adding he had been back home visiting and had attended an appointment with an epilepsy clinician.

"He was happy with his medication, happy with his lifestyle, happy that things were going well – he could live a normal live and keep doing what he was doing," Shaw said.

When Jon went to bed the night before Father's Day, she told him: "Don't forget you're doing dad's breakfast in the morning. Love you, see you tomorrow."

She said she found him dead the next morning when she went to wake him, adding: "It was absolutely sudden and out of the blue."

The charity was set up in 2020, at the height of the Covid pandemic, and Shaw said it was not until December that year when people started to make inquiries about the monitors they were providing.

The devices, which cost about £1,000 each, measure movement, heart rate and changes in temperature - alerting carers when a seizure happens.

Shaw, who has been named a finalist in BBC Radio Stoke's Make A Difference Awards, said she was "proud" of what the charity has accomplished.

Asked what Jon would make of it, she said: "He was such a lovely young man and he was always for the person who was suffering or didn't quite fit in – he was always there for that person.

"Jon would be thrilled people know his name and associate his name with letting people live the lives they should do because he was just that sort of person."

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