Kirsty’s Story

Kirsty’s journey with epilepsy began when she was just six months old. After receiving the MMR vaccine, her mother found her in the cot, blue and unresponsive. A trip to the hospital revealed that Kirsty had suffered a severe reaction to the vaccine, which caused a stroke. The stroke damaged the left side of her brain, leading to epilepsy.

 

Initially, Kirsty’s seizures were minor and easy to conceal. She would space out for a few seconds and then return to normal. However, as she grew older, the seizures became more intense. Kirsty began experiencing tonic-clonic seizures, characterized by full-body convulsions, rolling eyes, and unconsciousness.

 

“I would just go blank, space out for a few seconds, then come backto full consciousness. I’m not sure what age I was when I started experiencing the big seizures where I would fall to the ground, body shaking, and roll my eyes right back and suck my cheeks in. Depending on how long they went for, I would need to sleep and it would take me a bit of time to wake up. When I did, sometimes it was so frustrating because I could think and hear but I couldn’t talk and would slur my words.”

 

By age 15, Kirsty was experiencing up to 15 seizures a day, which severely disrupted her life. She struggled in school, both academically and socially, and spent most of her days seizing and sleeping. When doctors suggested brain surgery, she initially refused. However, after a particularly severe 15 minute seizure left her hospitalised for three days, she reconsidered. The disruption to her social life and a missed party convinced her that surgery was necessary.

 

“I remember saying no to the surgery. But I became so unhappy that epilepsy was ruining my social life. Because I had had epilepsy from the start, I never knew what a ‘normal’ life was.”

 

Kirsty underwent brain surgery at the Royal Children’s Hospital in Melbourne. She approached the surgery with a positive mindset, feeling ready for a new beginning. The surgery was a success, completely stopping her seizures. She went from taking 12 tablets a day to none.

 

“On the day of the surgery, they were going to push me down to the theatre in a wheelchair, but I refused. Instead, I walked fast – I almost ran! I was excited I was going to start my new life.”

 

Post-surgery, Kirsty has led a regular, healthy life, though she remains acutely aware of the stigma surrounding epilepsy. She experienced firsthand how people, including teachers and adults, would treat her differently and often panic during her seizures.

 

Before having children, Kirsty worked operating rollers and dump trucks. After becoming a mother 13 years ago, she shifted to working as a mental health and disability support worker, driven by a desire to help others. Her past with epilepsy is not something she discusses often, but she believes that public understanding of epilepsy has improved over the years.

 

Kirsty enjoys a happy life and cherishes every moment. Despite her challenges, she strives not to take things too seriously.


“I like going away for the weekend with my kids, spending time with animals – I currently have two dogs, a cat and two pigs. I have all ways dreamed of having two mini highland cows.”

 

Kirsty’s connection with the Epilepsy Foundation began through Client Services worker, Lisa Rath, who reached out to her mother. Lisa became a supportive friend throughout Kirsty’s journey, even post-surgery.

 

“Lisa was great! She was like a friend the whole way through my journey. I rang and spoke to her about 15 years later and she still remembered me and was still working for the Epilepsy Foundation.”

 

Kirsty wants the public to understand epilepsy better and break down the stigmas and myths surrounding it. She emphasises treating people with epilepsy like anyone else and not panicking during a seizure. She believes that with greater understanding and support, those with epilepsy can lead fulfilling lives.

 

Kirsty’s story is a testament to resilience and the power of support. Her journey from diagnosis to living a fulfilling life inspires others to overcome challenges and advocate for greater awareness and understanding of epilepsy.

 

You can help us support people who have been impacted by epilepsy, like Kirsty, by donating today. Visit fundraising.epilepsyfoundation.org.au/donation

 

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