Parents grieve loss of little Louis to rare disease

The Woonona toddler was two years old.

Louis died at his second home at Bear Cottage, in Manly, on Monday, July 8, with his parents James Lovell and Amy Harper beside him.

He was listening to the soundtrack of his favourite movie Moana as he fell asleep for the last time.

"The feeling of losing him is like nothing we've ever felt before," Mr Lovell said.

"Amy and I were both present as he comfortably took his last breath and he made one last well-known facial expression as I picked him up for his final moment."

Krabbe Disease is a rare incurable genetic disease that affects the body's nervous system.

Louis' parents spent the last 18 months filling out Louis' Life List, making sure their child could experience as much as possible.

With his family, Louis was able to go to the Australian Grand Prix in Melbourne and meet Bugs Bunny and Daffy on the Gold Coast.

Mr Lovell previously told Australian Community Media the list was "not just about seeing things, it's doing things, too".

"I take him down to the park and help him with all sorts of sports, from AFL to soccer and boxing, he bowled his grandpa with his first ball in cricket."

Louis was able to add to his list by playing board games with his family and even ran a red light while being transferred from Wollongong Hospital to Bear Cottage on Friday.

In June 2024, the toddler ticked off a special item on his list when he became the big brother to Alexander James Louis Lovell.

"He taught us all something in his short lifetime," Mr Lovell and Ms Harper said.

"Thank you for always supporting us over this extremely difficult time this last 19-20 months. We have appreciated every bit of the support we have received."