Jessica Taylor and Matt Cooper at his 21st birthday celebration ten years ago

A COUNCILLOR has told of his family’s pain at losing his cousin to a sudden epilepsy death, as he called for better awareness around the risks.

Matt Cooper, who represents Primrose Hill, said it would always be hard to understand how a young woman could go to bed one night and not wake up in the morning.

His cousin, Jessica Taylor, was 19 when she died from what is known as Sudden Unexpected Death in Epilepsy. Just a few days earlier they had been celebrating his 21st birthday together.

“A few members of my family have epilepsy and Jess had suffered with it more than most, but she was determined not to let it stop her doing things or stop her enjoying her life,” he said.

“People with epilepsy can find it isolating but she did everything to make sure it didn’t hold her back. But none of us knew that sudden death in epilepsy was a risk.

“My cousin didn’t, nobody told her it could be ­– and I think that’s what makes it so hard. It might have happened at any time. “If somebody dies in a car crash, it’s terrible but at least you know what has happened and why, but with this you are left wondering what could have been done differently. You think what would she have been able to do if she had known that this might happen.”

The tenth anniversary of Jessica’s death is on Saturday. At the time, she had been working in Stratford and wanted to start a career in dance therapy.

She was found unresponsive at her Nan’s house in Plaistow.

“We were all close – and I had just seen her at my birthday a couple of days beforehand. She was an energetic person and fun to be around – we had a great time but that was the last time I saw her,” said Cllr Cooper.

“You can’t explain the shock when the call came through to say she had died. It didn’t make sense and it’s something we all still think about.”

So every year around the anniversary, Cllr Cooper raises some money or awareness around SUDEP Action ­– a small charity trying to help bereaved families.

Matt Cooper as a baby with his brother Daniel and cousins Natalie and Jess

“There is some research around it but they can’t really say what causes it and why – it often will be at night where somebody goes to bed and then doesn’t wake up,” he said.

“It’s a small charity but it does more than fund research though, it is a great support for families going through this who need somebody to talk to.

“When you look at people’s stories on its website, a lot of them are about a lack of communication. People might move doctors and the records aren’t passed on properly, or one doctor might be well aware of the risks of sudden death in epilepsy but another might not.”

The aim of the awareness campaigns is not to scare anybody who has epilepsy that they could die at anytime, but instead to make sure everybody has the right information about what steps can be taken and medication that might help.

Researchers also want to make sure that the cause of death in cases are properly recorded as they try to work out a potential cause.

It often affects younger people who are otherwise healthy. It could relate to changes in heart rhythm or breathing, or a seizure interrupting brain function, but more knowledge is needed.

Sammy Ashby, chief executive officer of SUDEP Action, said: “We know there are at least 21 epilepsy deaths each week in the UK – and it’s likely that figure is rising, following the pandemic and with ongoing pressures on the NHS. Many of these deaths will be due to SUDEP – and a large number of these deaths are preventable.

“That just isn’t right, which is why SUDEP Action pushes for better access to information, care and services.”

he added: “We want to change things to ensure those with epilepsy have all the support, knowledge and awareness they need to live as safely as possible.” If you would like to donate to the charity and see its work, go to: www.sudep.org