JESSICA and Tim Green are determined to raise awareness of Sturge-Weber syndrome.
The couple hope to become Australian advocates for the disorder after their daughter Zayla, 2, died from the condition six months ago.
Sturge-Weber Syndrome is a congenital neurological disorder that affects the nervous system, skin and eyes.
Depending on the severity, children with the syndrome can have a port wine birthmark, and develop visual field deficits, epilepsy, glaucoma, delayed learning and muscular disabilities.
The condition affects one in 50,000 people.
‘‘I want to do this in memory of Zayla and for all of the other families that have a children with Sturge-Weber syndrome,’’ Mrs Green said.
‘‘It is so rare that there were no websites or support groups available.
‘‘I was so shocked. It made me feel alone to know there were no support groups in Australia.’’
It prompted her to create the Zayla Green — Sturge-Weber Syndrome Facebook page which has received support from people around the world.
Children and staff at Wattle Grove Long Day Care Centre will be doing their bit to raise awareness on Friday, for Sturge-Weber Awareness Day.
The kids have made arts and craft projects dedicated to Zayla. They have covered a canvas sheet with pink and purple hand prints.
On Friday, children and staff will dress in pink and purple clothing.
Mrs Green said she hoped to establish an Australian foundation to raise awareness.