Kieran and Bec Van Jole with their children Alyssa, 9, Raven, 3 and Lyla, 11months.
Kieran and Bec Van Jole with their children Alyssa, 9, Raven, 3 and Lyla, 11months. John McCutcheon

It's terminal: Dad's wish to spend time with dying daughter

TWO BEAUTIFUL children. Now nine and three, both healthy and happy.

For Bec and Kieran Van Jole life was not without its hurdles, but it was still smiling on them.

That was until a rare genetic disorder neither knew they were carrying was passed onto their third child.

Now the Caloundra-born and raised couple are left counting the few days they have left with their 11-month-old daughter Lyla, who will be lucky to reach school-age and has been given virtually no chance of living to see her 10th birthday.

"We just want to provide her the best life we can."

Bec's wishes aren't complicated.


Kieran and Bec Van Jole with Lyla, 11months.
Kieran and Bec Van Jole with Lyla, 11months. John McCutcheon

For a family stepping into the unknown every day all the loving mother wants is to give her terminally ill daughter the best quality of life - however short it may be - she possibly can.

Thanks to the generosity of the Coast community there's hope they may be able to fulfil that wish.

Self-employed tiler Kieran currently works 6-7 days a week to support his young family.

Bec, unable to work, spends her days driving Lyla from their Meridan Plains home to a constant stream of appointments with specialists, physiotherapists, dietitians and doctors in Brisbane and the Gold Coast.

"Ever since she was born she's had trouble," Bec recalled.

"It's all terminal.

"You just don't expect it. We cherish every single day and we're happy every single day that we have with her. It can happen to anybody."

Lyla was tested and found to have severe hearing loss, failing the hearing test before leaving the hospital after her birth.

That was followed by a throat operation.

The underlying cause and the condition that will eat away at Lyla's quality of life before ultimately claiming it is Peroxisomal Disorder.

It's a rare condition that means her liver doesn't function properly meaning her blood doesn't clot and she can't process sugars, proteins or fats.

"They (sufferers) usually live for a couple of years or so... they're lucky to get to school age, most never get past 10 years old," Bec said, matter of factly.

"She will end up having more trouble, organs can fail in the end and it can affect the brain.

"It's a struggle all the time. All we have to do is just try and give her everything we can," Bec said as emotions started to pour out.

The humble couple aren't comfortable asking for people's help, but the Sunshine Coast Falcons have come to their aide.

On July 9 Sunshine Coast Stadium will play host to Lyla's Family Fun Day from 12.15pm-4.30pm to try and raise funds to help with both her medical treatment and financial pressures on the family in the hope it may afford Kieran some more precious time with his daughter.

"It would mean a lot," Bec said.

"It's hard to accept people raising money for you but we know it's for Lyla."

To support the Van Jole family get down to Sunshine Coast Stadium on July 9 for the Falcons home game or donate to: SC Falcons, BSB: 124 161, Acc No: 2023 2537, Reference: Lyla.