Stroke Foundation is pleased to announce its first Childhood Stroke Lived Experience Advisory Group, describing it as an important voice for Australians impacted by childhood stroke.
The group comprises six adults who had a stroke as a child, and six parents of young survivors. It’s the first advisory group specifically formed to represent the needs of survivors of paediatric stroke, their families, and carers.
Stroke Foundation Acting Executive Director Stroke Services Eamonn O’Toole said the members will meet four times a year to inform Stroke Foundation activities and projects. Their valuable insight will also assist with research which has the potential to benefit future generations.
‘Approximately 600 Australian children have a stroke each year,’ said Mr O’Toole.
‘Awareness of paediatric stroke is gradually growing amongst health professionals and in the community, largely driven by passionate people with lived experience, including those in this group. But there is much more work to be done to ensure children receive their stroke diagnosis and treatment faster to improve their chances of a better recovery,’ he said.
Stroke strikes the brain and can change lives in an instant. 50-85 percent of childhood stroke survivors will experience disabilities that last a lifetime.
The advisory group’s lived experience represents different stages of the stroke journey – from the early days of navigating information,and a child’s specific needs, to adult survivors who can reflect on the physical, cognitive and emotional challenges they faced while growing up.
Group member Hailey McKirdy experienced a stroke more than 20 years ago at age six. She said the paediatric system was not set up at the time to cater for stroke.
‘It took doctors two weeks to figure out what had happened, which was incredibly difficult,’ said Ms McKirdy.
‘I experienced speech and mobility issues and fatigue, but with time, family support and determination I worked out different ways of doing day to day tasks and achieving my goals. These days I have a partner, a stepson, a job and a mortgage.
‘I am so pleased there have been positive steps forward in the recognition, treatment and care of paediatric stroke in recent years. By being involved in this advisory group, I want other families to know they are not alone and that it is possible to live a full and happy life after stroke,’ she said.
Childhood stroke by the numbers
• Approximately 600 Australian children have a stroke each year.
• Stroke is among the top ten causes of death in childhood with the highest mortality in the first twelve months of life.
• Approximately one third of all cases occur in children less than one year of age.
• 50-85 percent of survivors of stroke will be left with long term problems which may include seizures, physical disability, speech or learning difficulties.