A day in the life of a Retts girl
ONLY about one in every 10,000 Australian children are diagnosed with the rare neurological disorder Rett Syndrome.
The condition leads to seizures, pain, anxiety, non-verbal and an inability to walk unassisted, requiring assistance in every aspect of the patient's life.
This is the reality for Tingoora teenager Kalila Vukelic who is on a quest to raise funds for a specially-trained dog to assist with her condition.
It affects mostly girls as it is a genetic disorder where an x chromosome is damaged.
Janine Vukelic said her daughter was non-verbal and had never spoken.
"A lot of her neurological symptoms come from the x chromosome unable to work, she's neurologically unstable," she said.
Even though Kalila's bowels, left hand, left foot and left eye are quite healthy, they do not get the nerve supply they need to work properly.
"She is able to use her right hand for finger food most of the time," Mrs Vukelic said.
The disorder has deteriorated progressively, with an increase of intensive therapies as she got older.
"When she was a little girl, she was just as active as any three-year-old. She used to climb on tables and have great balance," Mrs Vukelic said.
Kalila started having seizures when she was eight and by the time she was 12 she was having back to back seizures requiring hospital treatment.
The teenager now experiences less-serious seizures.
"We can pretty much predict there will be seizures in the morning and another after a nap," she said.
"They are mostly not as severe as they had been before."
Life for Kalila means many hospital visits and most of her days are taken up with mundane routines as everyday taken-for-granted activities are quite difficult to accomplish.