ALTHOUGH Zavier Elward is yet to take his first step by himself, he has a support team determined to help the Midland tot reach the milestone.
The 19-month-old has severe epilepsy and was diagnosed with West syndrome, or infantile epilepsy, a rare condition detected in babies old who have spasms and seizures that often come in clusters.
To help raise awareness of the condition, Zavier and more than 25 of his family members and friends will take part in the Purple Walk 4 Epilepsy WA on Sunday, March 25 at Curtin University in Bentley.
Grandmother Tynara Roberts said Team Zavier would walk as one, wearing shirts with Zavier’s footprints on them as well as nicknames and words used by family and friends to describe him.
“The main reason we are doing the walk is so Zavier’s parents Shaileen Roberts and Harley Elward can hopefully be exposed to more information and support, help raise awareness and show support for Zavier’s journey of learning how to walk,” she said.
“Its imperative to have such charity events to raise awareness for all diseases and conditions to help the community understand the impacts but also so people can come together to share stories and knowledge of things such as treatments and services.”
Zavier, who has experienced more than 150 seizures in one day and about 32 in an hour, is about the third baby in WA to be diagnosed with West syndrome.
With no known cure, the seizures are managed through trial and error of different treatment and medication, which Zavier’s parents have sought financial support for through a GoFundMe page.
Since Community News published a story in February, the family has raised more than $7300 to help pay for intense therapy that costs $1500 fortnightly.
Rocky Bay will also be helping the family apply to the NDIS for a specialised stroller for Zavier in coming weeks and the Ellenbrook Lions Club donated a specialist bath seat and a sleep monitor.
In addition to the Walk 4 Epilepsy, Ms Roberts has organised a Purple Dress-up Day on March 26 to help raise money for Epilepsy WA at Warnbro Primary School where she is an Aboriginal and Islander Education Officer and Education Assistant.
To support Team Zavier by making a donation, visit http://bit.ly/2u5NQxM.