Highton family’s mission to raise epilepsy awareness after daughter’s battle

A Highton family are on a mission to break down the stigma of epilepsy after their nine-year-old daughter was diagnosed with the brain condition last year.

Grace McConvill (far left) with her parents Joel and Renee, little sister Evie and brother George. Picture: Alan Barber

A Highton family felt alone and isolated after their nine-year-old daughter was diagnosed with epilepsy last year.

Renee McConvill said her daughter, Grace, told her she would get “strange feelings” at school in early 2023 but it was brushed off as anxiety.

“We were sitting down for dinner one night and she started to have a seizure,” Mrs McConvill said.

“It looked like she saw a ghost.

“She went into a bit of a daze but you could see the fear on her face.”

As the year went on, the seizures become more frequent.

“When I saw her have one, I thought ‘this isn’t normal’,” Mrs McConvill said.

After multiple tests, a magnetic resonance imaging (MRI) scan confirmed Grace had epilepsy, a neurological condition where nerve cell activity in the brain in disturbed, causing seizures.

“She was having focal seizures,” Mrs McConvill said.

“She can feel them coming on but she still struggles to put (the feeling) into words.”

Grace is on medication to help manage her seizures, which typically last for 10 to 20 seconds.

After receiving the diagnosis, Grace and her family said they felt isolated and alone due to a lack of support groups for children with epilepsy.

“There is no history of epilepsy in our family so it was quite a shock,” Mrs McConvill said.

“The support grounds out there were for children aged 16 and above and then other groups were for adults.

“There were none for children.”

Mrs McConvill and her husband, Joel, started to research epilepsy to educate themselves about the condition and learn the best ways to support their daughter.

According to the Epilepsy Foundation, about 1 in 200 children in Australia have the condition.

Grace McConvill (centre) with her parents Joel and Renee, little sister Evie and brother George. Picture: Alan Barber

“It’s a lot more common than we think but there is still a stigma around it,” Mrs McConvill said.

“We discovered focal seizures are quite common in children.

“We’re still learning and navigating our way through it.”

Mrs McConvill started a ‘Children’s Epilepsy Support Group’ on Facebook earlier this month for local families who have children with epilepsy.

“It’s really hard to explain to a child why they are having seizures,” she said.

Grace’s parents said they don’t want epilepsy to define their daughter, who still loves to swim, play netball and spend time with her friends.

The family have organised a fundraiser at Grace’s school, St Patrick’s Primary School, on March 8 to help raise awareness for epilepsy and break the stigma associated with the condition.

Students are invited to wear purple, the international colour of epilepsy, on the day and bring a gold coin donation, which will go to Epilepsy Action Australia.

Originally published as Highton family’s mission to raise epilepsy awareness after daughter’s battle