Woman praises epilepsy death charity fundraisers

Wendy Shaw's son Jon died unexpectedly in 2019

A woman from Cheshire whose teenage son died suddenly five years ago has thanked those who have fundraised to support a charity she founded in his name.

Wendy Shaw’s son was diagnosed with epilepsy, but was otherwise a healthy 19-year-old when he died from a condition known as Sudden Unexpected Death in Epilepsy (SUDEP).

Ms Shaw said she had initially assumed Jon had a seizure in his sleep and suffocated, but that later turned out not to be the case.

She has spent the years since his death raising awareness of the condition and providing seizure monitors.

On Friday customers and staff from the White Lion pub in Crewe, where Jon used to drink, will be taking part in a challenge to walk from Llangollen to Crewe.

The group hope to complete the 60-mile journey by Saturday evening, and money raised will go towards paying for monitors, which Ms Shaw said cost about £1,000 each.

The Jon Shaw Foundation has donated more than 300 monitors to families across the UK since 2021, she said.

Although it is still not known exactly what causes SUDEP, many with the condition are young and considered to be otherwise healthy.

It is thought changes to heart rhythm, brain function and breathing – possibly caused by seizures – contribute to it.

Ms Shaw said she established the foundation to raise awareness of SUDEP and to offer support to bereaved family members as well as to provide monitors that alert others when the recipient is having a seizure.

'I just went to pieces'

Speaking in late 2019 about the morning when she discovered her son had died, Ms Shaw said: “I went into his room, he was just laying on his front, his feet were sticking out of the bed.

“I just sort of tickled his feet but I knew they were freezing cold and it wasn’t freezing cold in the bedroom.”

“I just went to pieces,” she added.

Charity SUDEP Action estimates more than 40% of epilepsy deaths are avoidable, which Ms Shaw believes she can help reduce.

“I’m absolutely convinced that if we’d have known about SUDEP and we’d been aware that he could be monitored, he would be alive today,” she said.

“He suffered a seizure on his own, we didn’t hear it and we were unaware of it so we weren’t able to get to him to help him or even get to him in time to administer CPR effectively.”

She said it had been a comfort to set up the foundation and to know that she was doing something to help other families.