Not every stroke story has the happy ending that the family of Blue Mountains Councillor Brendan Christie received four years ago.
So with the onset of National Stroke Week (September 2-8) Cr Christie wants others to know his eight-year-old son Matthew's incredible survival story, so they can be aware of the warning signs and don't witness the "horrible cruelty" of the disease.
In 2015, Matthew, barely four, somehow survived three blood clots, a stroke and then the removal of 40 per cent of his skull. It was put in cold storage for months, while the swelling in his brain subsided.
"We were told to prepare for the worst," Cr Christie said.
The Head of Paediatric Neurosurgery at Westmead Children's Hospital, Dr Catherine Cartwright, told the Gazette soon after the event how surprised she was by his miraculous recovery.
She had sawn off the toddler's skull, opened up the brain to remove the clots, and then stitched and cemented that skull back on. Dr Cartwright said one quarter to half of the children whose skull bones were removed didn't survive.
"We were expecting he wouldn't have been able to move half his body."
About five out of 200,000 children nationally suffer from strokes, Matthew had the added drama of a "bleed into a stroke," Dr Cartwright said.
Signs of a possible stroke in a child can include headaches, seizures, one side of the body not moving as much as the other, a change in behaviour and a child that is sleepier than usual and "can't wake up", Dr Cartwright said.
In Matthew's case it was brought on by a virus - which led to an active bleed on his brain. The stroke damaged his speech centre and memory bank, but his right side compensated, and he has had intensive therapy. And even though his "cold storage" skull didn't take in the end, a titanium plate now keeps his brain safe.
Cr Christie recently addressed council about his famly's experience with strokes, and the council then voted unanimously to publicise National Stroke Week annually.
"Matthew's doing extremely well. You would never pick he's a stroke survivor. His hair covers the giant scar ... He's worked hard at his rehab and speech therapy ... He even got an A at school."
Matthew played three seasons with the Blaxland Redbacks, before his neurosurgeon stopped his contact sports. He checks in with her every two years.
"His skull is still growing they need to be sure the titanium plate stays in position so it is still protecting his brain. It's not a very common case they are unsure what the future will hold, as to whether he will require further brain surgery, it's just a wait and see thing," Cr Christie said.
"Stroke can happen to anyone. Even a three-year-old. It doesn't discriminate. Follow the FAST (Face drooping, Arms unable to be lifted above the head, Speech slurred, Time to call 000) signs to identify when it is happening and act," he added.
Matthew's Mum, Elizabeth still has flashbacks "any time I see an ambulance with lights and sirens" but hopes "the awareness this article will bring is worth facing those demons".
- This year 56,000 Australians will suffer a stroke. There is a stroke in Australia every nine minutes. Details: www.strokefoundation.org.au