Heartbroken Woonona family finds moments of joy to fill Louis' life

It took another two gut-wrenching months before their baby was diagnosed with the incurable Krabbe Disease in January 2023.

The rare genetic condition affects the body's nervous system and symptoms include muscle weakness and seizures.

His parents, Woonona couple James Lovell and Amy Harper, were devastated.

"I absolutely wailed with tears when I found out," James admitted.

The couple, inspired by US charity Hunters Hope, established by former NFL quarterback Jim Kelly and his wife Jill after their son Hunter was diagnosed with the same condition, created Louis' Life List, a list of all the experiences they'd love to share with Louis.

"It's no longer about what he can't do but what he can do," James said.

Most children diagnosed with Krabbe Disease do not make their second birthday so February 4, 2024 was a momentous day for Louis and his family.

"When we were given the diagnosis we thought he wouldn't make two and it was great celebrating that," James said.

Their quest for experiences continues to drive the family. Already they have racked up more than 200 adventures of varying magnitudes.

"We've been to over 25 lookouts, been on a helicopter ride - anything we can think of extravagant and small."

There have been big ticket items, out-of-town events as well as Wings Over Illawarra and Kiama Show more locally.

"It's 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."

When the family watch movies together so precious is the time that James hits pause when his son falls asleep or cries so the toddler "doesn't miss anything".

For Amy the family's trip to the Gold Coast was a memory to hold onto.

"I'm a huge fan of Bugs Bunny so going to Movie World and meeting Bugs Bunny and Daffy Duck was really special," Amy said.

And as much as James enjoyed the F1 in Melbourne, meeting Supercars driver Mark Winterbottom and checking out the Aussie star's garage, support from the Illawarra has touched James' heart - particularly one karate dojo in Albion Park.

Once GKR Karate Albion Park learned of Louis' situation they waived the usual age limit and embraced the toddler's involvement.

"They said the youngest age is three but when she heard the situation, she was like 'yep' and ordered him a full gi outfit.

"He punched through a board ... and everyone in the audience cheered, the effort, everything," an emotional James said.

Amy, too, is extremely thankful for the support the family have received from the community.

"Some people really go above and beyond," Ms Harper said. "We could not go on without the support team and Louis' medical team."

The family have a GoFundMe set up for those that want to help out.