Nineteen-month-old Zavier has suffered regular seizures since the age of six months, which has prevented him progressing.
Parents Shaileen Roberts and Harley Elward say little Zavier was healthy up until the age of six months, and are now hoping for a diagnosis soon.
“His brain is not coping. He will start developing properly again and then have a cluster of seizures and its back to square one again,” Ms Roberts said.
Mr Elward said the seizures started with his son staring off into the distance, then his smile would start to twitch on one side, so would his hands and legs, before progressing to his whole body.
After almost two weeks of tests, including an MRI, two lumbar punctures, x-rays and ultrasounds, Zavier was diagnosed with Western syndrome – only the third case in WA.
The couple were told Zavier would grow out of it by nine months old, but he still has seizures at least once a week.
“He doesn’t realise anything different is happening,” Mr Elward said.
“He doesn’t know what to do with himself. He started grabbing food and then had a seizure and he stopped - he doesn’t realise anymore that he can grab food.
“He was gooing and gahing and stopped that because he doesn’t really realise he can.”
The family will take part in the inaugural Purple Walk 4 Epilepsy WA on March 25 to raise awareness of the disease and meet other families in a similar situation.
“He (Zavier) can’t walk on his own, so we want to do it for him,” Ms Roberts said.
The family fun day will be held at Curtin University from 10am to 2pm, with a bouncy castle and animal farm to keep the kids entertained.
Anyone who wants to donate to Zavier and his family, CLICK HERE
This article originally appeared on The West Australian.