Welcome

Hello, and thank you for visiting. I'm Julie, Olivia's mum. This website shares our daughter's extraordinary journey, raises awareness of rare epilepsy and helps us keep giving Olivia the best possible opportunities in life.

Olivia was diagnosed with Doose Syndrome, a rare and severe form of epilepsy, when she was just 15 months old. What began as occasional seizures developed into a lifelong battle that has affected almost every part of her childhood.

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Olivia smiling in her new high school uniform on her first day

More than her epilepsy

But Olivia is so much more

Through countless challenges, treatments, hospital stays and difficult decisions, Olivia has continued to show incredible courage, determination and a smile that never fails to brighten a room.

She is funny, loving, determined, kind and incredibly special. She loves spending time with the people she loves, taking part in fundraising events and making memories whenever she can.

This website is a place to tell her story, celebrate the amazing girl behind the diagnosis, raise awareness and share the fundraising that helps support her journey.

Thank you for being part of her story. With love, Julie & family 💜

The girl behind the journey

OLIVIA'S STORY

It began when Olivia was just 15 months old.

She had been developing like any other little girl, but then she began having seizures. At first, they were occasional myoclonic jerks. Over time, however, her epilepsy became much more severe and began to affect almost every part of her life.

Olivia was diagnosed with Doose Syndrome, a rare and severe form of epilepsy. What followed was a childhood filled with seizures, hospital appointments, treatments and challenges that no child should have to face. Yet through everything, Olivia has continued to show an incredible strength that amazes everyone who knows her.

Olivia as a toddler, before her diagnosis

15 months

Age at first seizures

300 a day

Seizures at her worst

6 types

Of seizure she lives with

Feb 2021

Major brain surgery

Olivia wearing an EEG cap during monitoring

Olivia recovering with her teddy after brain surgery

Living with drug-resistant epilepsy

Over the years, Olivia has experienced many different types of seizures, including myoclonic, absence, tonic-clonic, tonic, atonic and focal seizures. Her epilepsy has proved extremely difficult to control. She has tried numerous medications and treatments, and our family has explored every avenue we could to try to improve her quality of life. Olivia has also spent many years following a ketogenic diet as part of her epilepsy treatment.

In February 2021, Olivia underwent major brain surgery in the hope that it would reduce her seizures and give her some much-needed freedom from epilepsy. Sadly, the outcome was not what we had hoped for. Instead, her epilepsy became even more difficult to manage, and our family found ourselves facing a new and incredibly challenging chapter.

Olivia finding her smile again in the hospital playroom

A childhood shaped by epilepsy

Epilepsy has taken away opportunities that many children simply take for granted. It has affected Olivia's education, her independence, her ability to safely take part in everyday activities and the freedom to do many of the things that other children her age can enjoy without having to think about seizures.

There have been frightening days, exhausting days and days when we have wondered what the future might hold. But there have also been happy days. There have been smiles, laughter, celebrations, family adventures, fundraising events and precious memories that we will treasure forever. And those moments are incredibly important.

Olivia climbing a wall in a harness and helmet

Olivia's strength

Despite everything she has faced, Olivia continues to be an extraordinary young girl. She is kind, loving, funny and determined, with a beautiful personality and a smile that can brighten even the hardest day. She loves spending time with her family and friends and enjoys being involved in fundraising events whenever she can.

Strength doesn't always look like winning a battle. Sometimes strength is simply getting up and facing another day.
Sometimes it is finding a reason to smile when things are difficult. And sometimes it is continuing to hope when the road ahead is uncertain. That is Olivia.

Team Awesome Olivia at the Kiltwalk finish line

Olivia walking the Kiltwalk hand in hand with family

Why we share her story

We share Olivia's story because awareness matters. Rare epilepsy can be incredibly isolating for children and their families, and sometimes it can feel as though nobody truly understands what life is like behind closed doors.

If sharing Olivia's journey helps another family feel less alone, raises awareness of Doose Syndrome or encourages someone to learn more about rare epilepsy, then telling her story is worthwhile. Our fundraising also helps us continue to support Olivia and give her opportunities that might otherwise be difficult to provide. Every donation, every fundraising event, every share and every kind message makes a difference.

Thank you for listening

Thank you for taking the time to learn about our beautiful girl. Thank you for caring. And thank you to everyone who has supported Olivia and our family throughout this journey. There is still a long road ahead, but we will continue to walk it with Olivia, one day at a time.

With love, Julie & family 💜

Help fund Olivia's treatment