Kate and Marleigh’s story

“You have 10 minutes to say goodbye to your daughter”

Kate Fisher will never forget the doctor’s words.

It was the height of the COVID-19 pandemic, and her daughter Marleigh, age three, was critically ill with autoimmune encephalitis and severe secondary epilepsy.

Marleigh’s seizures were unpredictable and relentless – striking anywhere from every few weeks to every few hours, lasting from a few seconds to an excruciating 39 hours. Standard anti-convulsant medications failed to control them. Frequently, she slipped into status epilepticus – a life-threatening state where the only option was to place her into a medically induced coma and intubate her.

As the medical team prepared for the worst, Kate and her family were given just 10 minutes to say goodbye.

“We were terrified,” Kate shares. “We had already accepted that there was a chance she could die, but what we couldn’t fathom was that she’d die without us there.”

Against all odds, Marleigh survived.

For many, that might have been the end of the story. For Kate and Marleigh, it was only the beginning.

Before the diagnosis

Before she fell ill, Marleigh was an energetic, happy toddler who loved playgrounds, tending to the family vegetable patch, and gathering eggs from the backyard chooks.

When her illness struck, unexplained symptoms, such as confusion and speech difficulties,   rapidly escalated into prolonged, life-threatening seizures. Each episode took something away: she lost the ability to walk independently, could no longer feed herself, regressed to wearing nappies, and had to rely on a speech device to communicate. For a period, she didn’t even recognise her own parents.

Again and again, she was rushed to hospital, at times airlifted by helicopter to a paediatric intensive care unit and placed into an induced coma as doctors fought to save her life.

Nearly a year after her symptoms began, Marleigh was finally diagnosed with seronegative autoimmune encephalitis. For Kate, the diagnosis brought relief – but also a devastating reality: there was no cure.

An acquired brain injury and FND

As the primary inflammation gradually subsided, Kate hoped for a return to normalcy. Instead, their family entered a complex new chapter.

Although Marleigh had survived autoimmune encephalitis, she was left with an acquired brain injury (ABI) and later developed Functional Neurological Disorder (FND). FND is a condition in which there is a problem with how the brain sends and receives signals, causing genuine neurological symptoms despite no structural damage to explain them. It can affect movement, sensation, speech, memory and awareness, and symptoms can fluctuate from day to day.

Kate says Marleigh’s treating psychiatrists believe the FND was not caused by the autoimmune encephalitis itself, but that the acute PTSD associated with the medical trauma she experienced during treatment may have contributed to its development.

Today, Marleigh manages persistent seizures, extreme fatigue, and severe cognitive challenges. A few hours at school can require days of home recovery, and her symptoms shift unpredictably from day to day.

“People see this beautiful little girl,” Kate explains. “They don’t see how hard her brain is working every single second.”

One of the family’s greatest challenges is distinguishing between life-threatening epileptic seizures and functional seizures caused by FND. While an FND episode doesn’t cause structural brain damage, a physical fall during an episode poses severe risks.

Living with an invisible disability

Cognitive load and overwhelming fatigue dictate Marleigh’s daily routine. A weekend birthday party often demands two full days of recovery. She attends a mainstream school on a tailored curriculum – capped at 16 hours per week, maximum four hours a day, with Wednesdays set aside strictly for rest.

Sensory overload, memory lapses, brain fog, and variable impulse control create constant hurdles both academically and socially.

When Marleigh relied on a wheelchair and a speech device, her challenges were obvious to the outside world. Today, her disability is largely invisible.

Why awareness and research matter

Raising awareness helps people understand the realities of living with a brain injury or neurological condition. It can also help others recognise the warning signs earlier – for themselves or someone they love.

“Every day of research is a day closer to a cure, prevention options, or treatments to improve quality of life for people impacted by brain injury or neurological conditions,” Kate says.

“Government investment tells me that Marleigh is a priority. Philanthropic support reminds me that people are good and kind.

“Together, all of these things give me hope. Even if this isn’t something that’s resolved within my lifetime, it gives me hope for the next generation.”

“No two days look the same in terms of ability,” Kate says. “As parents, we always have to plan for the worst-case scenario. Even though Marleigh is 10, she cannot cross the road without holding my hand.”

Even swimming demands undivided focus. Due to her seizure risk, Marleigh requires constant, active supervision directly in the water – not simply a parent watching from the side of the pool.

Kate advocates tirelessly so that no other parent has to stand beside their child’s hospital bed wondering if a life-saving treatment will arrive in time.

“Hope comes from knowing people care enough to keep searching for answers. Every breakthrough starts with research.”

Through her advocacy initiative, Milkshakes for Marleigh, Kate continues to raise vital awareness for blood and plasma donation while shedding light on invisible disabilities.

Support brain research

The Brain Foundation funds vital research into neurological conditions, enabling scientists to discover better treatments, improve patient outcomes and work toward cures.

By supporting brain research today, you’re helping create hope for families like Kate and Marleigh’s – and for the thousands of Australians living with neurological conditions.

About Kate Fisher

Kate Fisher is a health sociologist, podcast host, bestselling author and TEDx speaker. Inspired by her family’s lived experience after her daughter survived a life-threatening autoimmune condition, she founded Milkshakes for Marleigh, a global advocacy initiative that makes the life-saving impact of blood and plasma donation visible through research, storytelling and community connection. Kate is also a proud Ambassador for the Brain Foundation.

Website and podcast: milkshakesformarleigh.org
Watch the TEDx talk: The Life-Saving Act Nobody Sees
Children’s book: The Milkshakes for Marleigh