AWESOMEOLIVIA

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.

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'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.

Our hope for Olivia

Our greatest hope is simple. We want Olivia to have the opportunity to live the happiest, fullest and most fulfilling life possible. We want her to have opportunities, experiences, friendships, memories and dreams. We want to continue searching for the best possible care and support for her, while raising awareness of rare and drug-resistant epilepsy.

And above all, we want people to see Olivia for who she really is. She is not defined by her seizures. She is not defined by her diagnosis. She is Olivia — a remarkable girl who has faced more than most people could imagine, yet continues to show courage, determination and hope.

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.