Together, we play a vital role in ensuring people with epilepsy, their families, carers and friends, are fully supported on their journey with epilepsy.
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“Something's happening to Maverick. He's not responding to me…”
In one night Katie’s world changed.
As Katie was getting ready to put her youngest to bed, she heard strange noises coming from her 5-year-old’s room. Little did she know Maverick was having a seizure. That night began a long and at times difficult journey in understanding what was happening to her beautiful boy.
Initially diagnosed as a common childhood epilepsy, Maverick’s condition worsened over time with further seizures, developmental regression, and behavioural changes, eventually leading to a diagnosis of a rare epilepsy syndrome (CSWS) after extensive testing.
“It’s hard to explain his epilepsy to others when you’re trying to understand it yourself. Now we explain it as having constant seizures, but you can't see them.” Katie
Despite multiple treatments, Maverick’s epilepsy is drug-resistant. As Katie focused on his care, trying to understand and manage his seizures, she knew she needed help. Overwhelmed, concerned, and uncertain, she contacted the Epilepsy Foundation.
From that moment we have been by her side providing guidance, support, information and tools. We created and regularly update Maverick’s Epilepsy Management and Emergency Medication Plans, essential for his family, friends and school. We sent our Epilepsy Nurses to educate teachers and staff, improving his safety and care at school. And we connected her with other families to share experiences and insights.
“I remember the neurologist telling us we would need an Epilepsy Management Plan from the Epilepsy Foundation. It has been amazing having their support. Having someone you can talk with – the Foundation has been and continues to be an incredible support.”
Your donation makes a difference for a parent like Katie. Please donate for families impacted by epilepsy.
“His seizure was a whole 38 minutes long!”
Naomi’s life changed in one day after receiving a phone call...
Naomi’s first day back at work should have been routine. Her 18-month-old son was at home being cared for by his grandmother. Around lunchtime she received a call that would change her and her family’s world.
Making her apologies, Naomi raced to the hospital where her son had been taken. Upon arrival she was told Braxton had a 38-minute-long seizure.
Although Braxton was diagnosed with Benign Rolandic Epilepsy (a type of childhood epilepsy) his seizures became intense and recurring, creating constant fear and concerns about his future, and impacting his schooling and friendships.
“I felt terrified, scared as to whether he'd be able to live a full life - would he be able to drive a car, get married, have children, have a career. All the things you want for your child. It was the fear of not knowing - I just went into panic.”
Over time, with epilepsy medications, Braxton’s seizures became shorter and less frequent.
Like many people who care for someone with epilepsy, Naomi has experienced the emotional toll, moments of panic, gradual adaptation, and growing awareness of how common epilepsy is.
We’ve been by Naomi’s side helping her to gain knowledge, confidence, and practical tools to manage Braxton’s condition, transforming fear into a sense of control, while reinforcing hope that he can still lead a full and meaningful life. We provide personalised support, answer each and every question, education and training on administering medications such as midazolam, and guide people through every stage of their epilepsy journey.
“The Foundation empowered me with knowledge, confidence, advocacy support, and a sense of security. I’ve gone from panic stations to being capable and in control when Braxton has a seizure.”
Your donation provides life-changing support for a parent like Naomi. Please donate for families impacted by epilepsy.
We’re a constant in people’s lives.
With them through every stage of their epilepsy journey.
Providing them with the support, information, tools and care they need.
Please show your support.
Donate now
1800 437 453 or (03) 8809 0655
donations@epilepsyfoundation.org.au
