The family of a Victorian boy who died suddenly from epilepsy hopes his death can highlight the importance of organ donation, as his legacy lives on through others.
Six-year-old Archie Michael, from Donald in the state’s northwest, died after suffering an epileptic seizure on February 7, just weeks after receiving an epilepsy diagnosis.
Archie “randomly” had his first seizure in October 2023 and things only got worse from then, mum Amanda Maddumage told 7NEWS.com.au.
Stream your local 7NEWS free on 7plus >>
The young boy experienced generalised tonic-clonic seizures, during which a person loses consciousness and has stiffening and jerking of the muscles; focal seizures, which occur when nerve cells in the brain send out a sudden electrical signal; and absence seizures, which can cause someone to blank out or stare into space.
“It’s quite rare to have all three of those together,” Maddumage said.
Before he was diagnosed, Archie was on twice-daily medication.
“He’d done two different types of EEGs, two different CAT scans and an MRI, but they still couldn’t find answers,” Maddumage said.
Archie was diagnosed with epilepsy in January 2024.
But another seizure last week “was just too much for his brain” and Archie died from sudden unexpected death in epilepsy (SUDEP).
In SUDEP cases, no other cause of death is found when an autopsy is done.
The fatal complication of epilepsy kills more than one in 1000 people, and one in 4500 children, according to Epilepsy Action Australia.
“I need people to understand just how serious epilepsy can be because I didn’t even understand properly until Archie,” Maddumage said.
Archie was a smiling face, well-known throughout the tight-knit community, Amanda’s sister Sarah-Kate Maddumage told 7NEWS.com.au.
“He was always saying hello to everybody,” Sarah-Kate added.
“He was always caring about everyone else before himself.
“Everyone would always stop when he would yell out to them, and they would high-five him or fist bump him. Whatever it was Archie wanted, they always stopped to do it.”
SUDEP claimed the life of their “little ray of sunshine”, but the family made the brave decision to donate Archie’s organs to save another life.
“The wonderful staff at the Royal Children’s Hospital — we can’t thank them enough for the dignity and care they showed our little boy right until the very end,” Maddumage said.
Archie’s liver was transplanted into another young child, who has since been moved from ICU at the Royal Children’s Hospital in Melbourne onto the general ward, Maddumage said.
“If that means that family doesn’t have to feel the heartbreak we now unfortunately have to go through, then that brings us some sort of relief,” she said.
She urged those in the same situation to follow in Archie’s footsteps and become an organ donor.
“Just knowing my little boy spent his whole life caring for others and even now, his legacy is still helping others, and our main goal is to continue this for him,” she said.
“It’s an important thing to do because although we’re grieving, it’s comforting to know that our child, or whoever it may be, can help others.
“They no longer need them, and if they’re viable organs, then they’re better off going to someone else to save someone else having to feel any heartbreak that we may feel.”
The family has started a fundraiser to assist with funeral expenses.
