Bunbury mum raising awareness and funds for 2yo daughter’s rare condition

A Bunbury mother is calling for more public awareness and understanding of a rare genetic condition her two-year-old daughter lives with.

Cassie Gordon wants more people to be aware of schizencephaly, a rare brain malformation that means “split brain” in which there is a slit in the brain.

Mrs Gordon’s daughter Sienna lives with the developmental birth defect as well as a list of other conditions including hydrocephalus (water on the brain), quadriplegic cerebral palsy, epilepsy and global developmental delay.

She has not come across anyone else in WA with schizencephaly, but found some people in the Eastern States and the US.

“There’s a group called We Are Rare in America, they’re doing great things over there, and they are actually aware of schizencephaly,” Mrs Gordon said.

“There’s a schizencephaly day in America, which I share awareness about as well even though it’s not classed as a proper day here.”

Along with awareness of the rare condition, Mrs Gordon wanted to encourage conversation about children like Sienna.

“People staring at children like Sienna is not only rude for Sienna but it makes the parents so uncomfortable,” she said.

“I’d rather people ask questions and come and talk to me and have a conversation.”

Mrs Gordon and Sienna travel to Perth multiple times a week for physical, occupational, hydro and speech therapies and occasional hospital visits.

This impacts the family financially with fuel costs as well as emotionally by spending lots of time apart, according to Mrs Gordon. The family is hosting a movie fundraiser this Sunday at Grand Cinemas Bunbury to raise money for a wheelchair accessible van to make travel to Perth easier.

“In our car her feet are squished against the seat and she also has something called dystonia, you lift her up and try and put her in the car and she straightens out so it’s so hard to get her in the car seat,” she said.

“It would be so much easier to just wheel her in, plus she’s got feeding pumps, oxygen, suction, a bunch of other stuff so a day trip to Perth fills up the car.”