A mum whose son died suddenly from epilepsy is hoping to transform care for people with the condition and save lives.

Emma O’Brien, from Istead Rise, near Gravesend, lost 11-year-old Leo in December 2023 due to a condition called Sudden Unexpected Death in Epilepsy (SUDEP).

He was first diagnosed with epilepsy when he was three.

She explained: “While the diagnosis was a massive shock for the whole family he was very quickly put on medication and it was well-managed and didn’t affect him too much.

“But then during Covid when he was around seven it quickly escalated and we lost control completely.

“The whole lack of having a school routine really affected him. He was diagnosed with autism just before lockdown and that had quite a bit toll on him.”

In June 2020, Leo suffered his first cluster of tonic-clonic seizures which quickly started to become “more violent in nature”.

Despite trying a number of medications and treatments, nothing seemed to be helping.

Emma explained: “It was sadly the start of the end. He was experiencing such a large volume of seizures.

“Bit by bit our hilariously funny chatty and kind little boy became lost in a fog of drugs.”

He was later diagnosed with KBG Syndrome, a rare genetic condition that affects several body systems.

In November 2022, Emma was informed that there were no further treatment options and that the family would have to manage his condition at home as best they could.

“But what we didn’t realise was a huge risk was SUDEP,” Emma said.

“Sadly, on December 14, 2023, two weeks after his 11th birthday he suffered his last ever seizure and died unexpectedly at home.”

The mum has now set up Leo’s Angels to support the transformation of epilepsy care.

It is a memorial fund dedicated to harnessing technology to transform epilepsy care and save lives in honour of her son.

Epilepsy affects approximately 630,000 individuals in the UK alone and each year, around 28.800 cases are diagnosed.

She explained: “Unless you’ve lost a child it’s very difficult to express the emotions that follow.

“It was a rollercoaster of three years before Leo died and what we now understand is the signs of SUDEP, which was the final cause of Leo’s death, were all there but we missed them.

“I have been working in the technology industry now for over 25 years and during Leo’s life, I observed the manual and reactive nature of our healthcare system.

“The lack of data-driven decision-making and communication breakdown that hampers the treatment and care of patients every single day.

“The purpose of Leo’s Angels is to change that. We’re on a mission to harness the role that technology can play in transforming epilepsy care and ultimately, hopefully saving lives along the way.”

She has set up a gofundme with a goal of £750,000.

“The biggest cost is the roll-out and implementation of the technology,” she added.

“Ultimately this fundraising is going to allow us to bring experts on board and to develop the technology to its fullest potential.

“I don’t want the epilepsy community to wait.

“This will be a legacy for not only my beautiful boy who was let down in so many ways, but it’s a way for us to channel our grief into a real purpose and make a real impact”.