Her mother Joanna says emergency treatments at the Royal Children’s Hospital have saved Kiara’s life on three separate occasions.

“It’s been very hard, I’m not gonna lie,” Joanna said. “It’s been very emotional, very up and down, and very unpredictable.

“It’s terrifying to go through all this. “But I am grateful for the medical interventions by the RCH. They have saved Kiara’s life numerous times.”

Kiara has a rare metabolic disorder called Maple Syrup Urine Disease. The incurable condition means the body cannot properly process certain amino acids like leucine, isoleucine and valine. When these so called branch chain amino acids build up in blood and tissue they become toxic, especially to the brain. The build-up of certain metabolites in the urine gives it a maple syrup like odour.

Joanna said Kiara’s leucine numbers had reached severe levels three times, each requiring a trip to the RCH emergency department for life-saving treatment. In most instances Joanna said Kiara appeared limp and unresponsive.

“It’s almost like a coma. Her eyes are shut, her breathing becomes laboured and she doesn’t respond to me trying to wake her up,” she said.

“Her body goes very floppy. Before it happens you see her eyes become swollen and it looks like she’s a little bit drunk. “I ran to my partner, with Kiara in my arms, yelling ‘She won’t wake up!’ I felt so scared and helpless.”

Joanna said her brave girl had faced tests, treatments and regular stays at the RCH with a smile. “She’s a very resilient bubba, which I’m proud of,” she said.

“She’s definitely got my sassy attitude. “She has gone through a lot, but she pushes through the pain and trauma, and always comes out stronger at the other end – happy, bubbly and very vocal.”

Joanna and her partner Chris have adopted a shorthand term for the joy and pain, hopes and disappointments, fears and calm of being on the frontline of their daughter’s difficult path.

“I call it the new normal,” Joanna said. “It is daunting when you have a specific idea of what motherhood will be like and it becomes something completely different.

“It took me a while to accept her diagnosis and understand the severity of it. “But watching Kiara gives me strength to support her and carry on with our new normal.”

Joanna added: “Regardless of her diagnosis, regardless of her condition, Kiara is our bubba and she just gives me hope that things will be all right.

“Until we get a cure, which is a very long way away, we have to keep battling and pushing through.”