Latest Appeal: Your support matters

Home > CEO Blog > Latest Appeal: Your support matters

“Not everybody understands. You might have family around you, but you can’t really go and ask them if this is normal because they don’t really know.” – Amanda, Eva’s mum

There are thousands of families in Australia living with epilepsy. Your support matters, perhaps more than you realise.

Nothing prepares you for seeing your child experience a seizure. It’s heart-stoppingly frightening, all the more so when it comes completely out of the blue. We still don’t understand many things about epilepsy. But we do know it can affect any family and it can be diagnosed at any age. Around 800,000 Australians will experience epilepsy in their lifetimes. When epilepsy strikes out of the blue, people desperately need a place to turn.

Epilepsy Action Australia is a real lifeline for thousands of families around Australia, every year. We bring trustworthy information, expert advice and support – because we understand what it’s like to live with epilepsy in a person’s everyday life. But we can’t be that lifeline without you.

Epilepsy is a complex condition, and everyone has their own unique challenges. Your support can be life-changing in so many ways. I want to share with you the stories of two families your generosity and compassion has helped.

Raf’s Journey:

Baby Raf was only four months old when his mum, Ming noticed he was shivering. She’d just laid him on his change table after a shower and thought he must be cold. But the twitching became stronger and he
started blinking rhythmically.

It was then that his dad, Ben figured it out – tiny Raf was having a seizure.

Raf’s first seizure was just the beginning. At first, they were told it could be a one-off. But five days later, he had another. Then another the following day, and the day after that. At six months old, Raf was diagnosed with Dravet Syndrome. This is a
type of epilepsy with very challenging outcomes – and it was a devastating blow for his parents.

“I think we were both hoping for a less severe kind of epilepsy,” Ming said.

Life became a blur for the family, as they struggled to manage Raf’s condition. Both parents, stepped back from fulltime work to care for their son, now three years old.

One of the toughest things for the family was learning that children with Dravet Syndrome are at a higher risk of sudden, unexpected death in epilepsy. Ming admits that it’s on their minds most days. Raf can never be left alone.

Raf has multiple triggers for seizures, including temperature sensitivity, so hot days, baths and showers are all fraught with danger.

“When he has a shower, both of us are present to make sure the temperature is right and we have to be very careful on hot days,” Ming explained.

Raf doesn’t sleep well and stays in the same room as his parents because they can’t risk him having a seizure alone. “Sleep deprivation has been going on for us for some time. We’re just worried that there will be the seizure that ends everything.”

Constant worry and round-the-clock care take a huge toll, not just on Raf’s parents but also his older sister, Eden.

“She [Eden] has had to grow up really quickly. The frequent hospital admissions mean I can be away for days with Raf.”

Overwhelmed by questions and worries, Ming got in touch with Epilepsy Action Australia. It was a life-changing call.

“Before Raf, we didn’t know much about epilepsy. Epilepsy Action Australia has helped us find our feet and navigate the unknowns. I don’t know where we’d be without them.”

Your support has helped us to help Ming and Ben in many ways. We gave them and their family members vital training in how to recognise and manage a seizure, so Ming and Ben can feel confident they have a circle of people they can trust to know what to do.

We helped them create a seizure management plan and access vital NDIS funding that enables them to properly care for their son.

And we also assisted them to access and train support workers, so Ming and Ben could step away from Raf for periods of time. Ming said it’s been a huge help.

“It means that we can get to sleep, or write, or do housework, or just spend time with Eden. When you have a child who is medically complex, the other sibling doesn’t get that much attention – Epilepsy Action Australia has made it possible for our family to function a bit better.”

Raf’s family lives in Victoria but another family you’ve helped lives on the other side of Australia. Eva had her first seizure eight years ago, when she was just one year old.

Eva’s Experience:

Mum Amanda said her second-born child “was sleeping in my arms when she became hot, and suddenly started convulsing. Her lips turned blue. It was very scary,” Amanda remembered.

At first, doctors diagnosed febrile convulsions. But this soon progressed. At 18 months, the family were
having a day out at the racetrack when Eva had a big seizure, lasting at least an hour.

“We were rushed to hospital and she was still not out of it and every time they took her off the oxygen, she started having another seizure. She ended up being intubated in ICU.”

Amanda’s young family was deeply affected by Eva’s diagnosis. Her marriage broke down under the strain of caring for Eva through sleepless nights.

Eva had her first seizure eight years ago, when she was just one year old. At first, doctors diagnosed febrile convulsions. But this soon

progressed. Her family was deeply affected by Eva’s diagnosis.

Your support has helped us to help families like Ming and Ben, and Amanda and Eva in many ways. We provided vital training, created seizure management plans, accessed NDIS funding, and trained support workers. That’s the power of your gift, today. Raf is a very happy boy, and Eva’s family feels a huge sense of relief knowing they can reach out whenever they need support.

Raf and Eva won’t stay children forever. And as they get older, their needs will change. But with your support, we can help them and their families navigate epilepsy throughout their lives. No matter their age or their situation, we’ll be there for them.

I hope you’ll support us with a tax-deductible gift before 30 June. You are making a tremendous difference to the lives of families like those of Raf and Eva.

Carol Ireland

CEO & Managing Director
Epilepsy Action Australia