Fletcher Dandy was four years old when he was diagnosed with a rare epilepsy syndrome that affects about 200 children in the world.
The five-year-old, of Horsham, was taken from the city's Wimmera Base Hospital to Ballarat Hospital last year in June after experiencing seizures and vagueness.
A few days later Fletcher was transferred to Melbourne's Royal Children's Hospital for more specialised treatment, where he was diagnosed with a brain condition called Febrile Infection-Related Epilepsy Syndrome, or FIRES.
Father Simon Dandy said his son was managing to fight the awful disease but for two months Fletcher was bedridden and lost his ability to talk and walk.
"When they first revealed his diagnosis they told us not to Google it because it was so bad," he said.
"My wife and I have not looked it up."
The Royal Children's Hospital sees only one case of FIRES every three years.
Mr Dandy said most children with FIRES developed learning disabilities and the survival rate was poor.
"Fletcher had constant seizures for almost two months, the worst being a period of 23 hours a day," he said.
"Fletcher's seizures were constant and relentless... it was very difficult to watch."
The Dandy family is still dealing with the side-effects of the disease, although Mr Dandy said Fletcher was one of the lucky ones.
"He is going really well and started school this year at Holy Trinity Lutheran College with modified hours," he said.
"Fletcher is still on heavy medication day and night and has regular check-ups.
"We are also dealing with certain behavioural issues."
The Dandy family is beyond grateful for its "guardian angels" at the Royal Children's Hospital.
"When it affects you personally and you have a child at the hospital, you realise just how incredible the facility and people are," Mr Dandy said.
Mr Dandy said Fletcher's neurology and nursing team looked after him like he was one of their own.
"We even received messages from Fletcher's doctor on his first day of school and Christmas Day," he said.
"They are world leaders and I couldn't speak of them more highly."
This year the Good Friday Appeal's public fundraising events have been cancelled due to the COVID-19 pandemic. Instead, all fundraising is online.
"This year I wanted to be out rattling the tins and collecting donations, but there is always next year," Mr Dandy said.
Mr Dandy is involved with Horsham Arts Council and said its last show of Mama Mia! raised about $3300 for the hospital.
The money will be donated to the Royal Children's Hospital and Ronald McDonald House where the family stayed while Fletcher was receiving treatment.
"Obviously no one wants to be at the hospital in the first place, but the Royal Children's Hospital go above and beyond for children and families," Mr Dandy said.
"They looked after not only Fletcher, but our whole family.
"For Fletcher, they were and still are his guardian angels."
While you're with us, you can now receive updates straight to your inbox twice weekly from the Wimmera Mail-Times. To make sure you're up-to-date with all the news from across the Wimmera, sign up below.