Every two weeks Leeton mother Maryanne Murphy could do little but comfort her daughter as her body succumbed to paralysis.
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"It was like watching a battery dying," Ms Murphy said.
"Every couple of weeks she would go into a vegetative state and each time we didn't know if she'd come back or if she would die."
When young Leeton resident Candice was 10 years-old she was diagnosed with severe chronic inflammatory demyelinating polyneuropathy, a neurological condition that destroys the protective coating (myelin) around the body's nerves. For five years she underwent plasma exchange to filter her blood through a central line protruding from her chest.
The line was keeping her alive, but it was a conditional lift for the once active child. Candice couldn't get the line wet. She had to sit and watch, bone dry, as her friends went swimming in the 40 degree summer heat.
The teenager underwent multiple surgeries to correct complications. Her mother gave up work to drive her to the Sydney Children's' Hospital for treatment every two weeks.
In 2015, Candice's neurologist suggested she try a vascular access arteriovenous fistula. It involved a procedure that would connect a vein to an artery in her arm that would allow direct access to her bloodstream.
"I was really excited to know there was a different road I could take," Candice said. It meant no more central line. But fistulas come with drawbacks, being prone to blockages and infection.
Repairing vascular fistulas were some of the most frustrating procedures Shannon Thomas and his fellow vascular surgeons had to perform, the Prince of Wales Hospital specialist said.
In 2013, Dr Thomas and his colleagues at POW opened a renal vascular access clinic, a one-stop shop for patients on dialysis and other patients with vascular access fistulas, including Candice. Candice travels to the clinic twice a week.
"I used to get scared in the lead up to treatment ... now it's a relief to be stable," she said. "She can get on with her life," Ms Murphy said.
- This story first appeared on the Sydney Morning Herald.