Louie’s story

This month’s Epilepsy Star award has been won by 7-year-old Louie. Just a couple of weeks ago, Louie saved his older brother Harley’s life, who was experiencing a nocturnal seizure. Louie had heard Harley, 13, making ‘loud noises’ and immediately alerted their parents. Doctors later told the family that Louie had saved his brother’s life. The boys’ mum Sophie, tells their story:

“We were in our bedroom, when Louie came in telling us that his brother had woke him up by ‘snoring’ and ‘making loud noises’. He seemed very distressed and said ‘something is wrong mum’.

“We immediately went into his brother’s bedroom to find him faced down, unconscious. It was terrifying. We called 999 and my husband went to grab a defibrillator. Harley has epilepsy, but had only ever had absence seizures up to this night, so our first thought was that he was having a stroke. We now know that it was a tonic-clonic seizure.

“Harley was taken to hospital, where he eventually came round. The doctors then informed us that without Louie’s brave intervention, Harley may not have made it.
“As parents we are extremely proud of Louie for raising the alarm like he did. We will be forever grateful and I don’t think we could put into words how proud we are of him. You will forever be our hero.

“We were also told by doctors that Harley is now at high risk of SUDEP (Sudden Unexpected Death in Epilepsy), which was a big shock for us. It’s had a massive impact on us as parents knowing the risks, and we have decided not to talk to Harley about it just yet, as he is already very anxious after this recent event.

“My advice for other parents would be to go with your gut feeling and, if something isn’t normal, call for help.”

Epilepsy Action advises that 999 should be called if a seizure lasts more than five minutes, you know it’s someone’s first seizure, they have one seizure after another without regaining consciousness between, or they are seriously injured during the seizure.

To find out more about SUDEP and how to manage and minimise risks, you can find more information and advice at: Epilepsy-related deaths and SUDEP – Epilepsy Action.