Amber's story

My story began at school in March 2019 when I was in Grade 4. My eyes started twitching, and my head felt funny. I was unsure of what was happening to me, but my teacher’s aide knew. An ambulance was called, and then Mum. I was feeling scared – it was my first ride in an ambulance.

I ended up in the hospital emergency room, and Mum and I stayed the night together. They sent me for an MRI and EEG, which showed seizure activity and the doctors said it was epilepsy because of my Cerebral Palsy. I take medication twice a day to help control the seizures.

Last year I had two seizures, in April and May, but thankfully they are under control for now. Mum has a bag packed, ready to go just in case. Every time someone talks about an ambulance or I hear its siren, I get anxious.

Epilepsy hasn’t changed our lives a great deal, except Mum and Dad have to bring Midazalom (emergency seizure medication) with us wherever we go.

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Derek's Story

"At the age of 60, I hadn't had a sick day in my life until last year when I started experiencing 'funny turns' at work and home.

I would become confused, forget things and was having uncontrollable shakes in my arms and legs then I would stare off into space not knowing what I was doing.

With a history of brain cancer in my family - my mother died of a brain tumour - I was convinced that was what I had, however, after speaking with a GP I was told the symptoms could be signs of epilepsy.

After a number of failed specialist appointments in Tasmania, I eventually travelled to the Royal Melbourne Hospital and following five days of tests, I was diagnosed with epilepsy.

Having missed four months of work, I was relieved to have some answers finally, but I didn't know what the diagnosis meant or what was next.

Since then, I have returned to work, and I'm building my hours up slowly to work 30 hours a week, which I enjoy.

Epilepsy has been a real eyeopener for me, and I have had to learn to try and slow down and not let the little things bother me anymore.

At this stage I have been seizure-free for 6 months and am looking forward to the future and being able to drive again.

With all the help I have had from my wife and people around me, and encouragement from Epilepsy Tasmania, everything looks bright again for my future."

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Sarah's Story

October 25, 2018, was the day that changed Sarah Grahame’s life forever and, as she says, “Broke me like I never thought could happen.”

Sarah’s brother, Joe, 40, died that day, from Sudden Unexpected Death in Epilepsy (SUDEP).

Sarah received an early morning phone call from her mother who said Joe had had a seizure and that the paramedics were working on him. Sarah says her mum’s words were, “I think he’s gone.” A second phone call, this time from the paramedic, confirmed the family’s worst fears.

Despite all their efforts they had declared that Sarah’s big brother and only sibling had died. “I still remember standing in his kitchen with Mum and Dad sitting down. We’d had police and coroners around us, then they took Joe and what was always a family of four were now a broken family of three, wondering what had just happened to our loved one,” says Sarah.

The aftermath of Joe’s death has been devastating for the family and it has taken some time for them to come to terms with the loss of their son and brother. “It took seven months for us to get notification of cause of death. Seven months of wondering what happened and how everything went so wrong.”

SUDEP is a little-known phenomenon that is still being researched; there are no known reasons why people with epilepsy die this way. Sarah explained the shock of the unexpected. “Joe was diagnosed with epilepsy at age 13. He passed away age 40 at home while packing his lunch for work. No one deserves to die this way. Everyone is worth something and not knowing why is tough to handle.” “Until October 25 last year I had no idea SUDEP even existed. I have lived with Joe through all the years he had epilepsy and yet I had no idea that you could die this way. How could I not know?”

Every year around 300 Australians die from epilepsy-related incidents, while fifty percent of these die from SUDEP. To support services to people with epilepsy and raise awareness of the condition, Sarah and her family participated in our Walk for Epilepsy last year. “This is why I walked with my family. I will do everything in my power to spread the word that absolutely no one should go it alone when it comes to epilepsy.”

Goldie's Story

Little Goldie was just 10 months old when her life, and the lives of her family, changed dramatically. “I had always wanted to name my baby after a flower, but which flower would be dependent on the colour of her hair. When my little girl was born and the nurse said, “oh she has red hair!” I was thrilled, because I would give her the name “Marigold” and the nickname Goldie,” says her loving mum, Charlene.

Charlene describes the first time she saw Goldie having a seizure. “I’ve never felt such fear as I did when I saw my little girl choking. She was so young. I remember we were eating dinner and then Goldie was choking. She was red, stiff and making very strange noises. We immediately called an ambulance, but by the time they arrived she seemed fine.”

“Then a couple of weeks later, the same day we were moving to the country from Melbourne, the very moment we walked into our new home it happened again. Goldie was choking, going stiff and making those strange noises. My heart sank. At that moment I realised this was not a one-off episode. This was something serious,” Charlene says. “Shortly after, I was told that my little beautiful girl has epilepsy. In fact, she has various types of seizures, including infantile spasms, focal seizures and absence seizures.”

Charlene says deep down she knew something wasn’t right when Goldie was much younger, as she was a very unsettled baby and wouldn't sleep. “It really wouldn't surprise me if there was seizure activity going on earlier than the diagnosis.”

“Although we're having trouble getting the seizures under control with medication, Goldie can be seizure free for a couple of months but then the seizures just sneak back in again,” she says. “She has up to 100 seizures every day. I can’t imagine what my little possum goes through.”

“When my husband Colin and I were told Goldie has epilepsy, it took a while to process that diagnosis. So many people said, “oh she’ll grow out of it,” or, “I had that as a kid and I grew out of it.” It’s hard to explain to them that Goldie will not grow out of epilepsy. “At the time, I thought epilepsy was something we could fix, but I was wrong. I didn't realise how serious and long-term epilepsy is. I didn't have an understanding and I certainly didn’t know there were so many different types of epilepsy.”

Charlene says epilepsy is not just a rough road, it can also be a lonely road, if it were not for the Epilepsy Foundation. “When Goldie was diagnosed, I rang the Foundation and found caring people on the other end of the phone helping me to understand, giving me the information I needed and being there to listen to me. I just wanted to talk to somebody who did understand. And the Foundation was there for me.”

“The Foundation has provided me with up-to-date, accurate information about Goldie’s epilepsy and the right words to describe her condition to family and friends. If I had questions that I needed to ask the neurologist, the Foundation gave me the correct terminology.”

“We were also able to develop an epilepsy management plan for the Day Care Centre Goldie goes to with the help of the Foundation. Without this plan, Goldie wouldn’t be able to attend day care. She wouldn’t be able to interact and play with children her own age, including other children who also have epilepsy.”

While the family is aware that Goldie has delayed development, Charlene says she is getting stronger and becoming more interactive. “She absolutely loves Woodley our dog. She giggles when she makes him bark, and boy does she loves making him bark, so she giggles more.”

“Today, our lives revolve around appointments and early intervention such as speech therapy, physiotherapy and more. Life is different to what I thought it would be, especially for Goldie. As a parent you have hopes and dreams for your child. Being told Goldie has epilepsy, I found myself grieving for what I wanted her to have.”

“Today, we’re no longer afraid of Goldie’s diagnosis because we have a better understanding of her epilepsy. Where once I was scared for Goldie’s future, meeting other families whose child or children have epilepsy through the Foundation and hearing their stories has helped us understand that things will be okay.”

“The support of the Foundation has helped me understand that it's about finding a new road and having the Foundation next to us on that road is giving us hope and strength. The Foundation has turned our journey with epilepsy into a positive one.”

“My daughter is my world. She makes me laugh, she gives me great joy, and she fills my days with lots of love. She’s only three years old but I feel so very blessed she is my little Marigold.”

Kayla's Story

Imagine yourself astride a large and powerful animal moving at break-neck speed, almost flank-to-flank with any number of other similarly focused horses and riders. And then imagine that while engaging in this adrenaline-charged activity, you’ve been diagnosed with epilepsy.

Horse-racing is a tough gig in its own right. To be a female jockey in the unusual situation of a sport where men and women compete equally on the same playing field is a particular challenge. Add to that a condition with the potential to heighten the risk in an industry where serious injury is common and Canberran Kayla Nisbet has achieved the trifecta.

Not that the inspiring 24-year-old has any intention of letting these things slow her down.

“When you’re so young, it can be a pretty intense occupation, but it’s what I’ve always wanted to do. I was never scared or afraid about coming back - if anything, it made me hungrier, realising it could all be taken away so quickly.”

One of six girls, Kayla followed her dad, John, a former jockey turned trainer, into the racing game. Apprenticing from the age of 16, in just three years, her star was on the rise with an ever-growing number of wins. Then in June, 2016, only three days after claiming the Apprentice Jockey’s Premiership for Canberra and Goulburn, Kayla had her first - and to date, only - seizure.

“I hadn’t eaten a lot, and I felt like I was going to faint. Mum said I kept holding my head, and then I collapsed,” says Kayla of the day it happened.

“I don’t remember anything about it, but my mum and sister who were with my at the shops, were obviously pretty frantic. They told me I was fitting for about 30 seconds or so.”
While there was no history of epilepsy in Kayla’s family, neurologists suggest it may have been the result of a head trauma she experienced in a car accident when she was four. She also says that in hindsight, there were signals.
“I think I was a bit run-down. Over a few weeks before, I'd ridden 12 out of 14 days, and although I felt fine, I was probably more tired than I thought. The specialists have said that fatigue is most likely my trigger.”
The young jockey says the first days after the seizure, in the absence of any clear knowledge of what had happened to her, were some of the most difficult of her life.

“They ran tests and all was normal. They kept asking me if I’d taken anything and I made it very clear I've never touched a drug in my life. I honestly believe that’s what they thought it was.”
“It was hardest not knowing what caused it, whether it might happen again. Epilepsy hadn’t even been mentioned.”
Kayla reveals she cried when the condition was confirmed. Her emotions were further thrown into turmoil when told she wouldn’t race again.
“I thought my whole life was coming to an end.”
As it transpired, there was one other Sydney-based jockey in Kayla’s position, although Racing NSW didn’t then have a protocol in place on how to deal with such a situation.
“It was decided I’d have six months off to see if I had another seizure and if not, ensuring my medications were at the right levels, I could ride again.”
“It took eight months but when I got the go-ahead I was straight back into it the next morning. I’ve never been more excited to sit on a horse.”
Almost immediately Kayla achieved another milestone by securing a ride in the prestigious Canberra Black Opal Stakes.

“After injury or illness, it’s hard to get going again - racing moves on. Canberra though is great for supporting local riders, and everyone was terrific.”

Prior to her epileptic incident, Kayla had suffered broken bones on a number of occasions and a period of questioning her ongoing involvement in the industry.

Three years on though, she is well and truly back in the saddle, notching up 41 wins over the season so far. Also currently vying for the Canberra Jockey's Premiership, Kayla’s sights are set firmly on the prize.

 “It’s common to have a second seizure straight after a first, but I didn’t, so that’s a good sign. I may never have one again - I just have to stay on medication and manage fatigue. As long as I do all that I’m fine to keep riding,” she says.

“There's been ups and downs but I’ve had a great career as a jockey. Whatever comes next, I’d love to stay in racing one way or another. All I’d say is that whatever your passion, don’t let anything stop you.”