In the heart of a challenging journey, nine-year-old Fletcher Dandy faces an unparalleled battle.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
The Horsham local and his family are navigating uncharted waters of Febrile infection-Related Epilepsy Syndrome (FIRES) and Leukaemia, drawing strength from a supportive family and community network, and a compassionate medical community at The Royal Children's Hospital (RCH).
Father Simon Dandy said Fletcher was four years old when symptoms of his rare condition first started showing.
"Roughly 200 kids in the world have FIRES," Mr Dandy said.
"The RCH have not had a case of FIRES since 2019 when Fletcher was diagnosed.
"He's the test case for treatment because most kids who have FIRES end up with severe brain damage, but he doesn't.
"He certainly was touched by an angel."
During the March long weekend, Fletcher experienced a longer-than-normal seizure at the Horsham fishing competition which led to the family calling emergency services and transporting Fletcher to Grampians Health.
A routine blood test identified lower-than-normal white blood cells. After being transported to the RCH, subsequent blood tests confirmed he had leukaemia.
"Unfortunately, we have been informed that Fletcher is the first person in the world to have both FIRES and leukaemia. It is a record he certainly would pass on."
The doctors confirmed that his FIRES syndrome did not cause the leukaemia.
"The two illnesses are definitely not related. He's just a very unlucky boy," he said.
"The unknown part is whether his cancer treatment would interfere with his FIRES condition.
"The neurology and cancer teams are working closely together, because they don't know how the conditions will impact each other, including the drugs being administered for both."
Less than two weeks into the journey, the family and medical professors must be patient and wait.
One big family
The Dandy family are no strangers to the RCH, with Fletcher first visiting in July 2019, staying in the Cockatoo Ward for neurology patients.
This time, he resides in the Kookaburra Ward for cancer patients; it is expected he will be receiving treatment at the RCH for the remainder of 2024.
"He misses his friends, but I don't think the full extent of how long he will be at the hospital has hit him," Mr Dandy said.
"Fortunately FaceTime has helped him stay in touch."
The RCH staff's empathy shone through from the moment Fletcher arrived.
"A nurse remembered Fletcher from his 2019 visit which is amazing when you consider how many patients they would treat each year" Mr Dandy said.
"The doctors, professors and nurses have been nothing short of incredible. Since 2019 when things have happened to Fletcher, we've called them at all hours, but they always answered.
"We have a professor who recently bought a dog and sent us videos; that's the kind of relationship we have with them. They really care."
In his first week at the RCH, Fletcher has had visits from Essendon, Carlton, North Melbourne and the Melbourne Storm which has boosted his spirits.
"The players genuinely seem to care and know they can brighten a young person's day. They seem to love it and see it as a privilege, not a chore."
Mr Dandy said the past two weeks have been a whirlwind for his family, but they cherish the community's support.
"We've had so much love and support come through," he said. "I've had so many people ask how they can help; something like this brings out the best in people."
Dig deep this Friday
Visiting the RCH, Mr Dandy said it is clear donating to the RCH is infinitely beneficial.
"The one thing is clear when you're there... you realise how many people are in pretty bad positions," he said.
"Especially in the cancer ward, you see young kids and babies undergoing treatment. Every person has a story. There's a common bond. I just encourage anyone to donate to the RCH Good Friday Appeal or Ronald McDonald House.
"Everyone knows about Ronald McDonald House, but you don't fully realise the amazing work they do until you've experienced it.
"Unfortunately, the hospital is always full; it's a big hospital, and there are always people waiting to get in there. We are incredibly fortunate to have the RCH on our doorstep; you don't want to be there but if you have to, it's the best place to be."