Horsham's Fletcher Dandy was four years old when symptoms of his rare condition first started showing.
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Concerns first arose when Fletcher's parents, Simon and Samara, had received a call from his kindergarten about him falling asleep while playing in the yard.
A week later, on June 30, 2019, Mrs Dandy was sitting at the kitchen table when she noticed Fletcher was having difficulty speaking, eventually collapsing asleep on the couch.
"I thought he was just tricking me. I picked him up and put him on the couch and he fell asleep," she said.
After a check-in with Nurse on Call, Fletcher was taken to the Wimmera Base Hospital, where he had his first chronic seizure.
"When the doctor left, all of a sudden Fletcher went limp. I laid him on the bed, and then all of a sudden he started foaming at the mouth. I ran out and called everyone to help," Mrs Dandy said.
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Fletcher suffered from multiple seizures at the hospital, and on the advice of a visiting paediatrician he was forwarded to Ballarat Health Services.
From there, his condition deteriorated. After a few days at the ward in Ballarat Fletcher was admitted to ICU.
Mr Dandy said Fletcher laid 'lifeless' in Ballarat's ICU for two days, with tubes assisting his breathing.
"It was amazing that he had gone from a perfectly normal child at 8 pm the night before, and less than 24 hours later they were basically bringing him back to life," he said.
"It kept happening over the next two days and on Wednesday they told us we needed more advanced care and sent us on to the Children's."
In the care of the Royal Children's Hospital Fletcher was given MRI scans and a lumbar puncture, among other procedures, to determine what was causing his sudden onset of seizures.
Both parents remember being brought into a meeting room full of neurologists and psychologists where they were informed of Fletcher's rare condition.
"They told us they thought he had FIRES and they didn't know how to fix it or why is was happening.
"They said basically most kids come out of it with brain damage, it depends whether it is mild or severe."
FIRES, or Febrile Infection-Related Epilepsy Syndrome, is a very rare form of epilepsy that according to the Epilepsy Foundation affects one in a million children.
Little research has been done about the condition, and Fletcher's parents still have not received a clear answer as to where it came from.
After his initial admission to the Royal Children's, Fletcher suffered from a prolonged series of seizures for up to 23 hours a day across six months.
The constant seizures took a toll on Fletcher, who had to learn how to talk and walk again.
Due to the rarity of his condition, Fletcher had to undergo experimental treatment under the provision of the Royal Children's Hospital's neurology team.
You just look at the support they have got, and how big they have gotten. What they provide is cutting edge, Fletcher might have died if they didn't have what they have got there
At seven years of age Fletcher's condition, while still present, has subsided enough to afford him a balanced life.
The challenge was finding a balance in the many medications required to treat his condition, which his parents said leave him fatigued.
"Because he has got through it relatively well compared to the others, the hard part is letting him be a kid and knowing what his limitations are," Mr Dandy said.
"He is now seven, so you want him to run and play and do all the things his mates are doing.
"He does martial arts, and that doesn't seem to affect him. That is the thing, we are trying to make sure we aren't limiting him in what he is doing."
Mrs Dandy said without the first-class care of the Royal Children's Hospital, she was unsure where her family would be.
"You just look at the support they have got, and how big they have gotten. What they provide is cutting edge, Fletcher might have died if they didn't have what they have got there," Mrs Dandy said.
No stranger to the Royal Children's, the Dandy family have spent months at the hospital's Ronald McDonald House free-of-charge.
The family also has access to the specialist advice of neurologist Dr Andrew Kornberg, who has taken the cause of treating Fletcher's rare condition.
"Now we have regular reviews, appointments through telehealth, and go down when we have to. It is amazing," Mr Dandy said.
"We just have to tap a button and it doesn't matter what time of night it is he will speak to us. No questions asked.
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"Knowing how busy he is and how many patients he has got, it is just staggering we have that support."
For Good Friday, Mr Dandy encouraged anyone to donate to the Royal Children's Hospital.
"If it raises an extra $100, it is happy days. When you see it you realise the money is going towards a good cause," Mr Dandy said.
Horsham has raised $981,120.07 to date since they began fundraising for the Appeal in 1973, and raised $24,009.43 last year.
Since 1931, the Good Friday Appeal has been dedicated to fundraising for The Royal Children's Hospital so that it can continue to provide world class care for children in Victoria and beyond.
Over its long and proud history, the Good Friday Appeal has provided over $399 million to The Royal Children's Hospital in Melbourne.
Funds raised support ground-breaking research, state of the art equipment and technology, education and family centred care programs so that The Royal Children's Hospital can continue to provide world class care to our children.
The Appeal will take place on Friday 15 April. Donations can be made online at goodfridayappeal.com.au.
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