Australian Epilepsy Project (AEP) welcomes new Lived Experience Ambassadors

March 15, 2023
AEP team member

At the recent launch of the AEP Hub SAHMRI, we welcomed Carolyn and Ned Travers, our South Australian Lived Experience Ambassadors, to the AEP team.

Ned has been under the care of Dr Michelle Kiley AM, Director of Epilepsy Services Central Adelaide Local Health Network (CALHN) and her team at the Royal Adelaide Hospital for some years. With Michelle’s unwavering support and clinical expertise, Ned is now living with more independence than ever before.

Michelle’s recent appointment as Lead Epileptologist AEP South Australia connected Ned and Carolyn to the AEP and their subsequent appointment as our AEP Lived Experience Ambassadors. In Carolyn’s words, here is their story…

“Ned had a normal fun-filled childhood with his two older siblings. He thrived at school, had lots of friends, played rugby, loved swimming, and surfing and riding his BMX bike, having sleepovers, and snowboarding in winter.

He was always happy, and apart from having a speech impediment, life was pretty normal for Ned.

Just before he turned 12, Ned had a Grand Mal seizure on a school excursion and his life​ changed instantly.​​ ​

He was diagnosed with the rare brain malformation, ​​Perisylvian Syndrome, the main side effect - intractable seizures, as well as paralysis of the mouth and tongue.

Gone was the sport, thriving at school, friends, and his beloved bike and razor scooter. The seizures started and just didn't stop. Ten, twenty a day.

By the end of 2014, the happy, healthy Ned had disappeared; he’d lost his confidence, was lonely​ ​and spent a lot of time just lying on the lounge.

"My wish for Ned was to realise he could still do great things."
Carolyn Travers, AEP Lived Experience Ambassador

​​That was when I decided to do something different and take Ned walking.​​ ​Not just a stroll around the block, but with a backpack, walking nearly 500kms on a pilgrim’s trail through the heart of Italy to Rome.

Gone was the stress of trying to go to school, the stigma of epilepsy, the constant doctor appointments, and hospital visits, and in its place was freedom, wide open spaces, fresh air, meeting new people and just walking, eating, sleeping, and laughing our way through Italy, just the two of us.

The seizures started to slow down, to just one a day. My wish for Ned was to realise he could still do great things that others can’t. He could still walk. And if you fall, you pick yourself up, and keep going.  And he did. It was a life changing and memorable journey for us both.

Over the last 10 years Ned has had thousands and thousands of every type of seizure imaginable. He has scars covering the back of his head from sudden drop seizures. He has dislocated his shoulders, knees, and arms from falls.

He becomes unconscious in water, he can’t ride a bike, drive a car, and has someone with him most of the time. His life is challenging but Ned has such incredible strength and resilience and continues to face all his challenges with dignity.

Through the unfailing care and support from Michelle Kiley (Lead Epileptologist, AEP South Australia) and her team at the Royal Adelaide Hospital, the seizures are improving. He has more independence today than ever before.

Ned and I are grateful for the wonderful opportunity to be part of the Australian Epilepsy Project, and proud to be Lived Experience Ambassadors for South Australia.”

AEP Participant: Darcey Colvin

Darcey was diagnosed with epilepsy about 12-months ago after what seemed like an extremely long year of testing with no results. She recently participated in the Australian Epilepsy Project to gain access to advanced testing (imaging, cognition and neuropsychology), testing that is not normally available as a part of standard care.

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