When Megan Smith's daughter Kaylah collapsed on a trampoline in 2019, it never occurred to her that her young child was having a stroke.
"How does an 11-year-old have a stroke? That's something that happens to old people," the Darwin mother recalls thinking at the time.
It was only when Kaylah woke up in intensive care that her family discovered she had hit her head on a ride at a theme park four days earlier.
Doctors believe the head knock caused the main artery in her neck to sever, a diagnosis that came as a huge shock to the family.
"Being healthy and 11 years old, I didn't believe [the doctor]," Ms Smith said.
The stroke damaged about a quarter of Kaylah's brain.
"When she came out of ICU, she couldn't move her right leg, her right arm," Ms Smith said.
"She couldn't talk, she couldn't walk, she couldn't eat.
"Kaylah and I spent about three months down in Queensland Children's Hospital doing intensive rehab."
Kaylah has made huge progress since then, doing various forms of physical therapy through NDIS funding.
"Now she can eat, she can walk, she can talk, she still can't use that [right] arm greatly," her mother said.
Parents need to know it can happen
The Stroke Foundation estimates about 600 Australian children have a stroke each year.
They are more common in babies than young children.
Ms Smith is certainly not alone in not immediately recognising her child was having a stroke.
Paediatric neurologist Mack Mackay was part of a study at Melbourne's Royal Children's Hospital which involved interviewing parents of children who had suffered a stroke.
"We asked them … 'Did you think something was seriously wrong with your child?' and they all said yes," Dr Mackay said.
"Then we asked them another question — 'did you think that could be a stroke?' — and half of the parents said no.
"Even though they knew the signs of stroke … they didn't think they could mean a stroke in their child."
He said only half the parents called an ambulance.
"That's an issue that parents aren't necessarily taking appropriate action because of a lack of knowledge," he said.
He said there could also be delays at hospitals, where strokes in children were not something emergency physicians always initially considered.
Dr Mackay is part of a team developing national protocols for health professionals.
"The aim of that is that it doesn't matter where a child is … we want to make sure children have the same access to expert care," he said.
"So all around the country children are having their stroke diagnosed as soon as possible so we can offer them treatments that transform their lives by minimising their brain injury."
Sharing a lived experience
Adelaide man Peter Dempsey works as a motivational speaker, something he and his family could never have imagined when he was left unable to walk or talk after having a stroke at the age of four.
"To this day, they still don't understand the reason I had the stroke," Mr Dempsey said.
"It was then just a really, really slow recovery process.
"I could half smile and that's pretty much it. I could move my eyes, I could move my left hand, not really talking, complete memory shut down, it was almost painful, the sensory overload."
Mr Dempsey worked for more than two decades to get over aphasia — a language disorder.
"It's like having the word on the tip of your tongue, but hundreds and hundreds of times a day," he said.
Eight years ago, he got into professional speaking and life coaching, using his own story to show what's possible.
"Therapists, occupational therapists and doctors have the book experience, which is extremely valuable, but it's another thing to have lived experience," he said.
He also hopes to inspire other young children who are facing a tough recovery from stroke.
"When I was kid I only wanted to get through tomorrow," he said.
"There weren't answers. Every direction we turned was harder. There were roadblocks. It was just way too hard.
"So to get in the position I am now … with so many amazing people around me, it's really special."
