STROKE Foundation has announced its first Childhood Stroke Lived Experience Advisory Group.

The group, comprising six adults who had a stroke as a child and six parents of young survivors, is the first advisory group specifically formed to represent the needs of survivors of paediatric stroke, their families and carers.

Stroke Foundation’s Eamonn O’Toole said the members would meet four times a year to inform Stroke Foundation activities.

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,” Mr O’Toole said.

“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.”

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,” she said.

“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.”

Closer to home, Hamilton Stroke Support Group at the Frances Hewett Community Centre was established to provide support to stroke survivors and their families.

After experiencing her first stroke six years ago, Hamilton Stroke Support Group co-ordinator, Jenni Bowman, spent a fortnight at Hamilton Base Hospital and said she was grateful for the team at Western District Health service (WDHS).

“I spent two weeks in hospital and I had to relearn to walk and use my left arm because my left side was gone,” Ms Bowman said.

“I did physiotherapy and occupational therapy … what is simple to some people can be really tiring and exhausting for people that have had a stroke.

“WDHS is fantastic at organising all your treatment.”

Ms Bowman first heard about the group through the hospital and attended the monthly meetings with her sister, Narelle Mibus who has also taken on the role of co-ordinator.

Ms Mibus said as a family member of a stroke survivor, it was important people understood that stroke affected people differently.

“Everyone is affected differently, everyone’s stroke is different,” she said.

“It takes a lot of determination to recover from stroke.”

Ms Bowman said the group helped her better understand her symptoms and was open to those who had experienced stroke, as well as anyone seeking more information and a supportive environment.

“You can get information from other people who have had strokes as well and I find it very helpful,” she said.

“We’re quite happy if the young ones would like to come along and they could get some information from us older ones.

“We do outings, get out and about, we exercise to help with recovery in the warmer weather and in the colder weather we are inside and have guest speakers … pharmacists, podiatrists - different people that may be able to help with recovery.

“Our first meeting will be in February and we usually start with a barbeque and discuss what we like to do next month.”

The Hamilton Stroke Support Group meets at 2pm on the fourth Wednesday of each month at the Frances Hewett Community Centre on Roberts Street.