When Dee and Tawhai Banks walked out of the Royal Children's Hospital after being told their daughter Emma had suffered a stroke before she was born, they felt lost.
In the hours, days and weeks following they searched the internet for information, answers and support but found very little.
Ms Banks and NSW mum Kylie Facer found each other online as they both searched for answers after learning their children had suffered a stroke, and together set up the support group Little Stroke Warriors in 2017.
What started as a small group of members has grown in to a support group that connects more than 500 families across Australia and is helping change the lives of families whose children suffer a stroke and even how pediatric stroke is diagnosed.
All this was achieved while supporting Emma to be the best she can be.
The stroke Emma suffered in utero, which left her with cerebral palsy and a large fluid-filled cyst where part of her brain should be, was not diagnosed until she was nine months old after her mum noticed she preferred using her left hand, her right hand and arm had dropped, she didn't grasp or reach with her right, didn't lift her knees and showed no interest in crawling.
At the time Ms Banks had no idea children could even have a stroke, much less babies still in the womb.
Now seven, Emma attends St Columba's Primary School and loves gymnastics but every day is a challenge.
"It's not all rosy but she is the most determined and fierce child I know," Ms Banks said. "As she gets older I realise the fight is really against accessibility and feeling like the world is not made for her. It's a constant fight to get access to things we all have."
While supporting each other, their families and those who found the Little Stroke Warrior group, Ms Banks and Ms Facer developed Our Family's Stroke Journey - a handbook for parents who receive a stroke diagnosis for their child - which has been rolled out to hospitals across Australia.
"It's something we really wanted when our children were diagnosed," Ms Banks said. "We left the Royal Children's Hospital, the best hospital in the world, with not a brochure or anything on childhood stroke and we didn't want any parent to feel that way."
As the Little Stroke Warrior community grew they identified another gap - the time it takes to diagnose children suffering stroke.
As parents got in touch, many told a similar story about delays in diagnosis.
"There are adults going to emergency departments and receiving stroke care within the critical five-hour time frame but children are not, and we constantly have parents message saying it has taken two days to get diagnosed and at the stage the damage is done," she said.
If stroke is identified early, patients can be given a blood clot-busting drug to help minimise brain damage.
IN OTHER NEWS
Ms Banks approached Ballarat Federal MP Catherine King and pitched the need for a national project to roll out stroke unit nurse coordinators at every major hospital and new guidelines to diagnose and treat children having a stroke so they are treated within the critical time frame.
The Australian Paediatric Acute Code Stroke eventually received $4 million of federal funding to design, develop and evaluate national protocols to increase stroke diagnosis within 4.5 hours for infants, children and teens.
After that win Ms Banks and Ms Facer handed over the organisation of Little Stroke Warriors to the Stroke Foundation and have since helped establish the first childhood stroke lived experience advocacy committee to drive priorities for childhood stroke forward in to the future.
Ms Banks and Ms Facer this month received the prestigious President's Achievement Award from Stroke Foundation president Professor Linda Kristjanson.
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