Olivia’s Story

On the 2nd December 2025 out of the blue Olivia experienced two major seizures, the second of which compromised her breathing and saw her ventilated and sedated. Olivia was transferred to intensive care in Evelina where she stayed in PICU for 4 days and on the Neurology ward for a further 4 days. It’s amazing how a child can go to be absolutely fine, wake up 20 minutes later and not be able to communicate and tell me what is wrong, Olivia was totally vacant, the lights were on but noone was home! Olivia didn’t know who she was, who I was or who Nana was.

Her first seizure was whilst I was on the phone to the Paramedics explaining what was happening. Olivia came round enough to tell me to put the light on for the Paramedics, typical Olivia! Olivia was blue lighted into Ashford, she was deteriorating the closer we got to hospital, her breathing was changing and she was becoming less conscious. Olivia was whisked into Resus, hooked up to loads of machines, all the time her oxygen levels dropping. Then the next seizure hit, completely different to the first and affecting the whole left side of her body. Olivia was not responding to medicine. Olivia’s body was failing her and she was ventilated, as a Mum I have never been so scared. The seizure stopped after 20 minutes, the doctors had control and Olivia was fighting.

It seemed to take hours for the Eveline intensive care team to mobilise and make their way to Ashford. Once the amazing team had arrived it took a further hour to transfer her to the Ambulance and another hour to arrive in London. Thankfully the seizure stopped and Olivia was stable.

Whilst Olivia was sedated and ventilated a multitude of tests took place and Olivia was diagnosed with Epilepsy which she may have for life. The tests have shown Olivia has multiple brain abnormalities which looking at a happy 7 year old no one would know about. Olivia is now

medicated with antiseizure mmedication daily. Since coming home Olivia has experienced a few seizures, most of which have been at night when sleeping. Olvia’s seizures are focal which means they affect one part of her body but still affect her communication and memory and breathing.

The reason for this story and fundraising is an amazing piece of technology that will alert me to changes in her body movements, her breathing and heart rate. Olivia hasn’t slept in her own room since going into hospital as she is too worried I wont hear here or wake if anything

happens during the night. This is also affecting Grace’s bedtimes with worry as she gets very upset about her sister not being there in the morning. The Nightwatch will give us all a better sleep and piece of mind that Olivia is safe. It is very scary putting a child to bed not knowing if a seizure will hit, how big it will be and if Olvia will wake the next normal with the risk of SUDEP. (Sudden Unexplained Death in Epilepsy. The Nightwatch is a small sensor that Olivia wears on her arm at bedtime and that transmits signals to me and will alarm on a base unit if anything falls out of normal range. The Nightwatch is not available on the NHS and as you can imagine is super expensive. As a Mum all I want to do is protect my Daughter, however, in this instance I can’t fund/do that by myself. Olivia has received partial funding from a Charity which is great but we have a way to go before the purchase is possible I am asking for any donation you are able to make in an effort to keep Olivia safe at night and give her the freedom to be back in her own room. If we was to surpass the target then any left over money would be split between an Epilepsy Charity and Ronald McDonald House Charity.

Epilepsy has turned our world upside down, however, Olivia is not letting it define, she is still the happy, dancing, singing, crafty girl we all know and love.

thank you for reading Olivia’s story.