Like most toddlers, Izzy adores The Wiggles and regularly dresses up in a tutu and yellow skivvy to dance along to Rock-A-Bye Your Bear.

She also loves Disney’s Frozen and relishes the chance to take off goofy Olaf the snowman.

Sometimes she’s shy, other times she’s outgoing and zany.

But unlike others her age, the Sunbury girl, almost two, has Bloom syndrome, a rare condition characterised by short stature, predisposition to cancer, genomic instability and a facial rash caused by exposure to the sun.

More than $5000 has been raised to help Izzy and mum Kirsty Ciantar attend a conference in the US next month, where she will be able to meet experts and other kids like her for the first time.

It’s about half what’s needed to make the trip a reality, with Izzy’s condition leading to elevated travel insurance costs.

‘‘She’s the only known case in Australia at the moment,” Ms Ciantar says.

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Izzy weighs just 6kg and wears clothes made for three-month-old babies.

She can rarely venture outdoors before sunset and often sits by the window, watching as other families go for walks.

When they absolutely have to go out during the day, Ms Ciantar covers Izzy in sunscreen, a hat, long-sleeved shirts and pants to protect as much skin as possible.

Izzy’s low immune system means she gets sick easily, so she can’t go to playgroup or spend much time with other kids.

Ms Ciantar says Izzy’s diagnosis last year came as an immense shock.

‘‘It was hard to hear,’’ she says.

‘‘I was so emotional, crying constantly, stressed, in denial.

‘‘It just didn’t seem fair.’’

Complications were first picked up in the womb and Izzy was born premature, weighing just 1.47kg.

But aside from her small stature and a propensity to get sick more than other babies, she was on track with other milestones.

While going for a walk in 2014, Ms Ciantar noticed Izzy’s lips were pale and her face was red.

Doctors initially suspected a cold sore, but her lip eventually split and was constantly bleeding.

A trip to the Royal Children’s Hospital and extensive genetic testing eventually found that Izzy had Bloom syndrome.

‘‘The last thing any parent wants to be told is that you will outlive your child,’’ Ms Ciantar says.

‘‘But that’s the truth in this. I’m expected to long outlive my child unless medical technology keeps improving.’’

While family and friends have been a great support, Ms Ciantar says she’s sometimes upset by unwelcome comments.

‘‘A man approached me a few days ago, accusing me of not feeding her, which ended with me in tears,” she said.

‘‘Luckily, there were lovely people around who stood up for me.’’

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