Embridge Consulting CEO and Founder, Emma O’Brien, has unveiled the launch of Leo’s Angels – a memorial fund dedicated to harnessing technology to transform epilepsy care and save lives – in honour of her son, Leo, who tragically passed away from Sudden Unexpected Death in Epilepsy (SUDEP) in December 2023.
Diagnosed with epilepsy at just three years old, Leo’s condition deteriorated rapidly by the age of seven when he was also diagnosed with autism, followed by a later diagnosis of rare genetic condition, KBG Syndrome.
Although described by his loved ones as ‘quirky’, neither the epilepsy or the autism affected his daily life until the outbreak of the COVID-19 pandemic when the unstructured nature of home-schooling took a heavy toll on Leo, and he did not have access to the support required.
In June 2020, Leo suffered his first cluster of tonic-clonic seizures and while his medical team emphasised the importance of returning to school and maintaining a routine, his reintegration back to school was neither supported nor challenged by the authorities, which sadly marked the beginning of a devastating decline in Leo’s health.
In November 2022, when Leo was turning 10 years old, Emma was informed that there were no further treatment options, and that they would have to manage his condition at home as best they could. Although Emma had accepted that she would be Leo’s caregiver for the rest of his life, she never imagined that he could die.
We cannot change what happened to Leo, but we can channel our grief into purpose. I have been working in the technology industry now for over 25 years. 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.
Epilepsy affects approximately 630,000 individuals in the UK alone. Each year, around 28.800 cases are diagnosed averaging 79 diagnoses daily.
However, Leo was more than his diagnosis. He was a loving, chatty, funny and incredibly kind little boy who deserved better. By supporting Leo’s Angels, you are helping us drive real change, fund critical advancements in epilepsy care, and sprinkle some Leo magic that will ensure that no child is lost due to gaps in our healthcare system again.
Emma O’Brien, CEO and Founder, Embridge Consulting
As Founder and CEO of impressive people-led business transformation consultancy, Embridge Consulting, Emma boasts a strong track record in enabling organisations to transform business operations by empowering people, process and technology and is calling out for support from organisations globally that are willing to help sponsor this initiative and accelerate the critical developments that are needed.
As such, Emma now plans to utilise her experience to fund and develop tools that enhance data-driven decision-making for clinicians, empower families with real-time information, and seamlessly integrate into healthcare systems to reduce delays in treatment for those suffering with Epilepsy.
In addition to developing Leo’s Angels, Emma and the Embridge team have also supported dedicated charity, Young Epilepsy, for the last 5 years and have successfully raised over £50,000 through internal charity initiatives that support young people living with the condition.
To find out more about Leo’s Angels please visit www.leos-angel.com or to make a donation visit: https://gofund.me/f40cabed