Toddler with dangerous breathing disorder doesn't qualify as 'disabled'
A Perth toddler who needs supervision just to breathe won’t receive much needed financial assistance because she doesn’t qualify as disabled.
Heidi-May Honess has a rare condition called micrognathia, which means her jaw has stopped growing.
The toddler has a hole in her throat just to help her breathe and her exhausted parents say they fear for her safety every time they have to go near it.
“It’s the fear of… we are playing with her airway, its nerve-racking,” Belinda Honess told 7 News.
It’s believed the 22-month-old is the only child in Australia suffering from the extremely dangerous condition.
It’s all hands on deck every minute of every day, with a nurse coming in once a week and some assistance from a childcare provider.
Despite the constant fear for Heidi-May's life, her condition does not qualify her family for government financial assistance.
“The social worker at the Princess Margaret has got all the knockbacks and then has advised us we don’t classify as getting the support from the government,” Mrs Honess added.
“We just want the government to change the system.”
Heidi-May’s father Shane works as a warehouse manager but it’s not enough to cover the mounting medical costs.
Facing financial ruin, the family has tried unsuccessfully to remortgage their house.
Heidi-May is due for her next operation in just under two weeks, which will see her jaw wired shut and bolts attached.
