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Shining a light on epilepsy

Leigh Croft with her children Phoenix Olencewicz, 8, and Isabella Croft, 2. Leigh is doing what she can to make more people aware of what it’s like to live with epilepsy, a condition which affects as many as 1 in 50 Australians.  Photo: Yvette Aubusson-Foley Leigh Croft with her children Phoenix Olencewicz, 8, and Isabella Croft, 2. Leigh is doing what she can to make more people aware of what it’s like to live with epilepsy, a condition which affects as many as 1 in 50 Australians. Photo: Yvette Aubusson-Foley

Leigh Croft and her two children all have epilepsy. In the lead-up to International Epilepsy Awareness Day, this courageous Dubbo mum is driving a new support group and raising money and awareness, NATALIE HOLMES writes.

Leigh Croft was just a toddler when doctors detected that she had epilepsy.

“I was diagnosed at the age of two. My mum had noticed that as a baby, I would just stare off into space and roll my eyes.”

She had her first seizure at that time, and was transferred from hospital in Dubbo to Sydney.

“At first they thought it was a convulsion related to teething. We had to go to Westmead for testing.

“In Dubbo, they thought it was epilepsy, but they weren’t sure.”

That was in 1980, and much less was known about this brain disorder than in today’s society.

For Leigh, having epilepsy affects everything she does – from her ability to learn at school through to her choice of career, physical health, emotional wellbeing and family life.

“At school, epilepsy was the cause of my learning problems. The more seizures you have, the more damage it does to your brain. I was placed in a special needs class.”

Leigh looked up to Mrs Skillethorn, her teacher at Delroy High, as she was someone who gave the students a lot of positivity.

“I had a lot of different teachers, but she really uplifted the kids.”

These days, Leigh works as a cleaner, but ideally, she would like to be a teacher’s aide or nursing assistant. But overworking and feeling tired or stressed can bring on a seizure.

“It’s hard to find work. They see it as a workplace safety issue – that if you have a seizure, you can hurt yourself or someone else.

“I also have slow days where I’m exhausted which makes it difficult.”

Having epilepsy also affects Leigh’s emotional wellbeing.

“It’s the cause of anxiety and depression. I can’t get a licence. As a teenager, I couldn’t get a job or go to parties like others did. Now that I have a family, I can’t take the kids places, I can’t go places. In that regard, Dubbo is very isolated.”

Even Leigh’s love of live music presents an issue for her.

“I love music but going to concerts is hard. My friends are in bands but I can’t go to see them play because of the lighting. Any lighting can affect me, even Christmas lights. When we go to see the Christmas lights, we go at dusk.”

Leigh’s two children, Phoenix and Isabella, have also been diagnosed with epilepsy. One day last year, husband Matt (Phoenix’s stepfather) thought that he was sulking.

“Phoenix was seven when he had a fit. I rang my mum in tears, Mum was in tears too. We took him straight to hospital.”

The eight-year-old also has PDNOS (a Pervasive Development Disorder Not Otherwise Specified) and is on the autism spectrum.

“He is intelligent, but the more seizures he has, the more it will affect him,” Leigh said.

His little sister, two-year-old Isabella, showed signs of epilepsy at just three months old.

“She was having little moments of jerky movement and having absences as well as passing out. They couldn’t find it at three months, she was sent home.”

Since then, Isabella has been through various health issues.

“She has been in and out of hospital since she was small. She also has sleep apnoea and problems with her tonsils and had to have grommets inserted. And she has low muscle tone.”

With both kids now diagnosed, Leigh has more to consider than just her own epilepsy. “It was always me, but it’s different now, I know what my mother went through.”

As a mum, Leigh finds it really stressful. She also has her own medical concerns caused by the epilepsy.

“Because of the seizures, I get severe back pain, I have had numerous broken bones and arthritis, as my bones have deteriorated.”

When it comes to describing this neurological disorder, Leigh is lost for words. She says that people tend to feel sorry for her rather than showing support.

“You get pity,” she said.

“It feels like a disease because it affects so much in my life. It’s an illness because you can grow out of it, it can stay dormant.

“It’s also termed as a medical disability. There’s so many ways you can say it. It’s just a condition that has a massive effect on my whole lifestyle.”

Learning to deal with epilepsy and lead a normal life is something that has been handed down a generation from mother to daughter.

“Mum wasn’t entitled to get extra help with me because they weren’t on a low income. They weren’t on a high income either, they were middle class.”

Some 37 years since her diagnosis, Leigh has now started a support group for people with epilepsy and their families.

“At the hospital, I met people with epilepsy and word has now got around about the group. It’s open to anyone of any age that wants a bit of support and information.

“It’s good for myself, to sit there and say things. It’s good to have somewhere you can go to talk about it. I also want the group to be able to say they’ve had a bad time but to focus on positivity.”

Leigh also hopes to initiate activities for families like hers that are affected by epilepsy.

“I’m hoping to do a lot of fundraising. My biggest goal is to have a camp for kids and family days out.”

The Dubbo Epilepsy Support Group meets every Tuesday at the West Dubbo Community Centre from 1pm to 2.30pm, with afternoon tea and a kids’ play area available.

Facts about epilepsy

Epilepsy affects 1-2 per cent of the population but new research by Epilepsy Action Australia shows that awareness is shockingly low, with only 28 per cent of people aware of the world’s most common serious brain disorder.

There are many misconceptions including the belief that epilepsy is rare, that it is a mental illness, and that all people with epilepsy are disabled.

Epilepsy is more common than Parkinson’s disease, multiple sclerosis and cerebral palsy combined.

Epilepsy is not a mental illness but a neurological condition that disrupts the electro-chemical activity in the brain.

Seizures are controllable with medication used in about 70 per cent of cases. In those whose seizures do not respond to medication, then surgery, neurostimulation, or dietary changes may be considered. Not all cases of epilepsy are lifelong, and many people improve to the point that treatment is no longer needed.

Epilepsy Awareness Day

Throughout March, communities around the world are raising awareness of epilepsy, culminating in International Epilepsy Awareness Day on March 26. 

During this time, people wear purple in honour of the day’s founder Cassidy Megan, and hold events to raise funds and awareness of the condition that will affect more than 800,000 Australians and 50 million people worldwide. 

In Dubbo, Leigh and others are selling merchandise and she is also looking for raffle sponsors. Leigh’s aim is to raise $700 for Epilepsy Australia and she will be holding a cake stall outside Myer Dubbo from 10am on March 22. For more information about epilepsy, visit epilepsy.org.au