Tom, aged 6, who has a rare condition which causes epilepsy and seizures, knows too well the benefits of receiving health care in Geelong, a 20-minute drive from his family’s home in Bannockburn.

The brave boy lives with refractory epilepsy, which means his condition cannot be treated with standard medications.

Tom takes three anti-seizure medications twice a day, and follows a strict ketogenic (high-fat, low-carbohydrate) diet.

His mother, Jess, says Tom’s seizures began when was 2.

“I thought he was playing around, until he became unresponsive,” Jess said. “Then different seizure types started happening. We got good control over it, and he was seizure free for two and a half years … and life was normal.”

However, in March last year, Tom’s seizures “came back with a vengeance … like nothing we’ve ever experienced.”

Since then, Jess has slept in Tom’s room every night to monitor her son.

“He has a lot of nocturnal seizures,” Jess says. “If I’m not waking up to him having a seizure, I’m waking up to check his breathing. That’s our life, but we make the most of it.”

Tom missed half of the school year in 2024 due to overnight seizures and tiredness the next day. He plays cricket and takes swimming lessons.

But the Hawks fan is especially keen to play his first season of Auskick soon.

Jess said Tom, and his supportive siblings Ollie, 12, and Maggie, 10, have faced his condition with courage and understanding.

“It’s difficult,” Jess said. “The kids will often ask, ‘Will you be here in the morning?’ because we quite often get an ambulance overnight to go to hospital.”

Jess said funding for regional health services are invaluable for kids like Tom, and children and families facing similar challenges.

“Tom is amazing,” she says. “He accepts what’s going on and he doesn’t complain. The doctors and nurses go above and beyond for him.

“The hospital is not scary for Tom because he’s only had good experiences.”