Leo's Angels: a legacy for others

No parent should have to suffer the loss of their child.

That is why Emma O’Brien founded Leo’s Angels after losing her own son, Leo Alan O’Brien, to Sudden Unexpected Death in Epilepsy (SUDEP) on 14 December 2023, only two weeks after his eleventh birthday.

Established in Leo’s memory, the not-for-profit community interest company harnesses technology to transform epilepsy care, helping families and clinicians access the information they need to make faster, better-informed decisions, ultimately working towards a future in which fewer lives are lost.

Leo was diagnosed with epilepsy at three years old. He was a bright, funny, exceptionally kind little boy, known for his infectious laugh, love of Harry Potter, and habit of complimenting strangers simply to make them smile.

However, his condition deteriorated rapidly from the age of seven, eventually becoming drug-resistant and causing as many as 52 tonic-clonic seizures in one month.

As Leo’s health worsened, Emma and her family encountered a fragmented healthcare system in which communication broke down, vital information remained scattered and treatment decisions were often made using paper diaries and parents’ recollections during short appointments.

Emma cannot change what happened to her son, but she is determined to ensure other families receive the information, support and protection her family did not.

Drawing on more than 25 years’ experience in technology, as Founder and CEO of a digital transformation company, Embridge Consulting, she created Leo’s Angels to turn devastating loss into meaningful change.

Within its first year, Leo’s Angels raised £100,000, established a multidisciplinary advisory board, began developing an independent research programme with PenTAG at the University of Exeter, built relationships across the epilepsy and health-technology sectors and grew a community of more than 2,000 social media followers.

The organisation is now mobilising research and exploring how technology could securely connect information currently held in different places, including seizure trackers, medication and wellbeing records and clinical systems.

At present, families may record seizures at home while information about medication, side effects, appointments and treatment is held elsewhere, meaning nobody has a complete, up-to-date picture of the patient. Clinicians can therefore spend much of a short appointment trying to piece together what has happened since they last saw them.

Rather than creating another standalone seizure-tracking app, Leo’s Angels aims to connect information from trusted sources.

To assist the organisation in continuing its valuable work, the charity is holding a black-tie fundraising event at Epsom Downs Racecourse on Saturday 19 September, from 6pm until 11.59pm.

To attend, please visit the Leo’s Angels gala ticket page.