Grant for epilepsy research

A $2 MILLION federal grant to help find a cure for genetic epilepsy offers a lifeline for one Australian family with two girls who are severely disabled.

Jaeli Williams, 8, and her sister, Dali, 6, have up to 50 seizures an hour and are non-verbal and intellectually disabled.

The Caulfield South girls were among the first in Australia to be diagnosed with the rare form of genetic epilepsy, Syngap-1.

Today, federal Health Minister Greg Hunt will announce a $2 million funding package to support research into finding a cure for such disorders.

“This new funding will support our leading researchers to investigate the mutation of the Syngap gene — a rare neurological condition which can lead to epilepsy,” he said.

Yesterday, the girls’ mother, Danielle, welcomed the research funds, which followed a meeting she and husband Danny had with Mr Hunt last year.

“The seizures are very distracting for the girls and make it hard for them to sit and learn or even eat a meal without their minds jumping,” Ms Williams said.

“We welcome the funds, not just for us, but all people with genetic epilepsy. It’s a lifeline which gives us a bit of hope.

“It’s not enough but it’s an amazing start.”

Epilepsy impacts more than 250,000 Australians.