Three-year-old Alexis has been fighting since the day she was born.
After countless tests and months of confusion, Alexis was diagnosed with spinal muscular atrophy, which her mother Kristi describes as a “child's version of motor neuron disease."
Due to Alexis' muscle weakness, she's unable to bear weight on her legs or lift her head. Her respiratory system is severely impacted; the weakness of her throat muscles inhibits her breathing and swallowing, and she is not strong enough to cough or clear her lungs.
"It makes her cry with sickness because she's not strong enough. It just sits there and develops into pneumonia, chest infections – she's had it all. Every time she has a cold, she is in hospital – she can't shake it. A normal healthy child when they get sick, they take about a week to get better, she takes about a month," said Kristi.
The only way for Alexis' sickness to be cleared from her system was through the use of a cough assist machine. This machine imitates the act of a cough – a quick breath of air effectively removing secretions from the lungs. The use of this machine prevents sickness such as a common cold from developing into something much more serious.
But securing funding for the machine ended up being a fight that Kristi wasn't prepared for.
The family was handballed between the NDIS and the state health department. No one was able – or willing – to help. Alexis was going to slip through the cracks.