Isla loves getting out in the fresh air but really does not enjoy being out in the cold, even though there are plenty of people who offer to spend time with her at the football.

Carisbrook Football Netball Club, in central Victoria, has embraced Isla and her family as their own and will host a fixture named in Isla's honour for the final home-and-away games on Saturday.

They know Isla is in a race against the time.

Bubby Isla is the only known Australian living with Classic Infantile Batten Disease or CLN1 - a rare and fatal neurological disorder with no known cure.

Gradually, the disease will rob Isla of her ability to walk, talk, see and eat. It will likely claim her life before her sixth birthday.

A suspended medical trial based in Canada has left parents Harley and Nikita in limbo. Nikita said the drug was on ice, halted from distribution amid ongoing financial effects on the biotechnology market from a global pandemic and conflict. There are not yet answers on cost or the likely wait.

But Isla continues to surprise.

Mum Nikita said there were days when Isla appears to have lost some functions, then the next day she might improve.

Isla can still hold her head, heavily, and sit up. She tries to use her walker and gets tired. Still, Isla loves therapy, her little legs kicking every time she gets in the hydrotherapy pool.

Nikita said her amazing daughter continued to fight and there was always a hope something will change. Carisbrook is playing in this hope too.

"We want to generate more push for awareness of rare diseases," Nikita said. "Any money we can save for funding the trial is amazing. We also want stuff to help Isla and make her like better and the boys...it's been so hard on them.

"We're not losing hope until we're literally told, 'no'. We still hold so much hope, her being so resilient, but we want to make memories as well for the boys and her."

The boys are brothers Harry and Paddy. They light up Isla's day whenever she sees them.

Too young to play football yet, Isla's brothers like to get out on the ground and have a kick on game day.

Their dad Harley joined friends at the club and pulled on the boots this season. The club embraced his family.

IN OTHER NEWS:

Carisbrook A-grade netballers organised for Wiggles stars Tsehay and Anthony to send Isla a video message singing her favourite song Rock-A-Bye Your Bear. Isla lit up.

The Redbacks' family day will feature Net Set Go at half-time of the A-grade netball and Auskick at half-time in the senior football while there will be plenty of fun with raffles, jumping castles and face painting.

The club will also be selling teal ribbons, emblazoned with "fight for Isla".

A women of Carisbrook Football Netball Club exhibition female football match will take to the field after the final siren of the senior men.

This is the club's final regular season home game at Carisbrook Recreation Reserve in the Maryborough District Football Netball League and the club is determined to make an impact.

Nikita said the club's support for her family was amazing.

Batten disease is a complex disorder, with 14 different forms and more than 400 known gene mutations. It affects one in 100,000 people worldwide. The disease was often first misdiagnosed as autism, epilepsy or developmental delays.