Leo's Angels - Transforming Epilepsy care and saving lives

Hi, my name is Emma, and I am here to tell you a story about a little boy who changed my life.

Some stories are too important to be forgotten, and some lives, though far too short, leave an impact that lasts forever. This is the story of my beautiful boy Leo—a bright, funny, and kind-hearted little boy who passed away 2 weeks after his 11th Birthday following a seizure that took his life suddenly and unexpectedly on 14th December 2023. Losing a child is every parent's worst nightmare and I am not sure there will ever come a time where I will accept he has been taken from us, and whilst I am desperate to be able to hug him just one more time and struggling to come to terms that I can't, I can't help to reflect on the journey we have been on since Leo blessed our world and how change is needed urgently to help other families and other children like Leo. So whilst I can’t bring my boy back, or change what happened to him and to us, what I can do is use our experience to help others. This is why Leo has changed my life. The day Leo was taken from us was a day when my purpose in life changed forever. I am determined to do whatever I can to share our experiences to drive meaningful change for others. May I introduce to you Leo's Angels. A Memorial fund that has been created in memory of Leo Alan O'Brien. The brightest angel of us all.

About Leo

Leo was diagnosed with epilepsy at just three years old. In the beginning, his seizures were subtle, sometimes barely noticeable. But at the age of seven, his condition deteriorated rapidly. That same year, he was also diagnosed with autism and whilst Leo always was quite 'quirky' neither the epilepsy or the autism affected his daily life. From the moment he was born Leo always had a huge smile on his face, he was a beacon of joy and innocence. His infectious laugh, boundless curiosity, his obsession with Harry Potter and an incessant belief that magic wands were real along with his unwavering kindness touched everyone who had the privilege of knowing him. He had a special gift for making people feel seen, always offering heartfelt compliments, even to complete strangers in a supermarket that would brighten anyone’s day.

However, the world around Leo did not always offer him the same kindness. When the COVID-19 pandemic struck in 2020, the unstructured nature of home-schooling took a heavy toll on him. Though government guidelines classified Leo as a vulnerable child in need of support, his school provided none—not even a simple phone call to check in. The lack of structure left him spiralling, and in June 2020, he suffered his first cluster of tonic-clonic seizures. Eight seizures in just 24 hours landed him in the hospital, where his medical team emphasised the urgent need for him to return to school and a routine. But rather than support his reintegration, his school excluded him, fearing another medical episode. This wasn't challenged by the authorities, there was no process to achieve a successful appeal and sadly this decision marked the beginning of a devastating decline in Leo’s health.

As Leo’s condition worsened, he was placed on multiple medications, each bringing new side effects. Communication between hospitals broke down, leaving him to fall through the cracks of the system. Calls and emails expressing concerns over his deteriorating condition went unanswered. Eventually, we were asked to keep a paper-based seizure diary—a shocking reminder of how outdated the healthcare system’s approach to epilepsy management remained. Countless hours of admin would take place as we were put into a system of routine appointments, that quite often would get cancelled at the last minute. Significant decisions were being made in terms of medication changes during short hospital appointments where the specialist epilepsy consultant would desperately try and gain a picture from us of how Leo was responding to his medication, manually gathering information from us as families in relation to side effects, seizure patterns etc before making speedy decisions to what treatment pathway we would take next. Leo was eventually diagnosed with drug resistant epilepsy. We were desperate. Living with a child with severe disabilities' and feeling completely helpless. Countless hospital admissions were made to stabilise Leo following regular clusters of seizures. We could see the rapid changes in medications were making him worse not better but were encouraged to keep going. Bit by bit Leo's personality was changing. Our bright, happy bubbly little boy now a shadow of his former self, peaking to 52 tonic clonic seizures in just one month. Pumped with emergency medication on a regular basis and barely able to string a sentence together as well as needing 2 adults to support him 24 hrs a day.

We were never warned about the risk of SUDEP (Sudden Unexpected Death in Epilepsy), but knowing what we know now, it was clear that Leo was at significant risk for some time before he died. We tried alternative treatment options. VNS and a ketogenic diet but in the end, we were unclear what treatments were having what affect. No central repository of information tracking what was happening and how this linked with his seizure pattern. In Nov 2022, when Leo was just turning 10 years old, we were told we had to live with his condition and manage it at home the best we could, we had exhausted all treatment options. We had accepted we would be looking after Leo for the rest of his life. But we never ever expected he could die. Just like that. We felt abandoned. It felt like no one was advocating for Leo, treatment decisions were being made with a significant lack of data and insights. I was keeping diaries of everything but had no way of getting this to his medical team in a way they could digest it and simply had to wait for the next appointment slot to be made. It was exhausting.

Change begins now....

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 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 and I know technology could transform the future care and support that children like Leo and families like us could receive.

So, in his memory, we are launching Leo’s Angels, a mission-driven initiative dedicated to driving technological innovation in epilepsy care. Our journey—living with a child with epilepsy, navigating fragmented healthcare systems, and facing the devastating loss of Leo to SUDEP—revealed how technology could play a transformative role in improving patient outcomes.

While there are several other incredible charities such as Young Epilepsy, Epilepsy Action and SUDEP Action focusing on broad support, awareness, and advocacy, quite often families like us don't know they even exist.

Leo’s Angels aims to complement these efforts by specifically targeting technology-driven solutions. We are dedicated to funding and developing tools that enhance data-driven decision-making for clinicians, empower families with real-time information, and integrate seamlessly within healthcare systems to reduce delays in treatment. Our goal is to ensure that no family has to experience the uncertainty and challenges we faced, harnessing the power of technology to create lasting, meaningful change.

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.

Each year more than 5 million people are diagnosed with epilepsy worldwide. 1 in every 220 children have an epilepsy diagnosis.

Join our movement for change. Your donation will directly support technological advancements in epilepsy care. Every contribution helps us bring real change.

Together, we can honor Leo’s memory by creating a future where technology bridges the gaps that once failed him and so many others.

With gratitude and determination,

Emma, Ben, Bonnie & Daniel O'Brien